International Public Health Policy and Ethics

INTERNATIONAL LIBRARY OF ETHICS, LAW,

AND THE NEW MEDICINE
Founding Editors

DAVID C. THOMASMA
DAVID N. WEISSTUB, Universit de Montral, Canada
THOMASINE KIMBROUGH KUSHNER, University of California,
Berkeley, U.S.A.

Editor

DAVID N. WEISSTUB, Universit de Montral, Canada

Editorial Board

TERRY CARNEY, University of Sydney, Australia

MARCUS DWELL, Utrecht University, Utrecht, the Netherlands
SREN HOLM, University of Cardiff, Wales, United Kingdom
GERRIT K. KIMSMA, Vrije Universiteit, Amsterdam, the Netherlands
DAVID NOVAK, University of Toronto, Canada
EDMUND D. PELLEGRINO, Georgetown University, Washington D.C., U.S.A.
DOM RENZO PEGORARO, Fondazione Lanza and University of Padua, Italy
DANIEL P. SULMASY, Saint Vincent Catholic Medical Centers, New York, U.S.A.
LAWRENCE TANCREDI, New York University, New York, U.S.A.

VOLUME 42

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Michael Boylan
Editor

International Public Health

Policy and Ethics
Editor
Michael Boylan
Marymount University
Arlington
USA

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Contents

Introduction: International Public Health: Morality, Politics,

Poverty, War, Disease ..................................................................................... 1
Michael Boylan

Part I Morality and Politics

Personal or Public Health?............................................................................ 15

Muireann Quigley and John Harris

Exploring the Philosophical Foundations

of the Human Rights Approach to International
Public Health Ethics ...................................................................................... 31
Kristen Hessler

Moral Interests, Privacy, and Medical Research ........................................ 45

Deryck Beyleveld and Shaun D. Pattinson

Torture and Public Health............................................................................. 59

Wanda Teays

Exporting the Culture of Life ................................................................... 91

Laura Purdy

Part II Money and Poverty

International Health Inequalities and Global Justice................................. 109

Norman Daniels

Poverty, Human Rights, and Just Distribution ........................................... 131

John-Stewart Gordon

Why Should We Help the Poor? Philosophy and Poverty .......................... 143
Christian Illies

v
vi Contents

Health Care Justice: The Social Insurance Approach................................ 157

David Cummiskey

Investments, Universal Ownership, and Public Health .............................. 175

Henrik Syse

Part III Medical Need and Response

Toward Control of Infectious Disease: Ethical

Challenges for a Global Effort....................................................................... 191
Margaret P. Battin, Charles B. Smith,
Leslie P. Francis, and Jay A. Jacobson

Shaping Ethical Guidelines for an Influenza Pandemic ............................. 215

Rosemarie Tong

TB Matters More ........................................................................................... 233

Michael J. Selgelid, Paul M. Kelly, and Adrian Sleigh

Ethics of Management of Gender Atypical

Organisation in Children and Adolescents .................................................. 249
Simona Giordano

Clean Water .................................................................................................... 273

Michael Boylan

Contributors ................................................................................................... 289

Index ................................................................................................................ 295

Introduction: International Public Health:
Morality, Politics, Poverty, War, Disease

Michael Boylan

This volume of original chapters follows on the well-regarded Public Health Policy
and Ethics (Dordrecht: Kluwer/Springer 2004). What is similar about this volume
to its predecessor is the general position that public health is more inclusive than
just epidemiology concerning various vicious microbes and sanitation. There are
many threats to public health and these include all the usual suspects: clean water,
sanitation, and disease control (all included here). But this volume also includes
other sorts of threats. These include human rights violations and unfairness in the
allocation of the basic goods of human agency such as health care and the opportu-
nity to protect ones self against threats against the same.1 The time is the present.
The place is the whole world. There is a conscious crafting of chapters and argu-
mentation to the global stage. However, that said, each issue must be repeated
within the context of individual countries. For purposes of clarity, I would suggest
that readers think about two sorts of countries in the world: wealthy countries
(those able to provide the basic goods necessary for action, including health care2)

1
For a theoretical defense of this position see my book, A Just Society (Lanham, MD and Oxford:
Rowman and Littlefield, 2004), chapter 3.
2
The Table of Embeddedness
BASIC GOODS
Level OneMost Deeply Embedded (that which is absolutely necessary for human action): Food,
clothing, shelter, protection from unwarranted bodily harm (including health care).
Level TwoDeeply Embedded (that which is necessary for effective basic action within any given
society):
Literacy in the language of the country
Basic mathematical skills
Other fundamental skills necessary to be an effective agent in that country, e.g., in the United
States some computer literacy is necessary
Some familiarity with the culture and history of the country in which one lives
The assurance that those you interact with are not lying to promote their own interests
The assurance that those you interact with will recognize your human dignity (as per above) and
not exploit you as a means only
Basic human rights such as those listed in the U.S. Bill of Rights and the United Nations
Universal Declaration of Human Rights

M. Boylan (ed.) International Public Health Policy and Ethics, 1

Springer Science + Business Media B.V. 2008
2 M. Boylan

and subsistent societies (those in which there are substantial portions of the popula-
tion at risk for disease and starvation because the country simply does not have the
resources to begin to help all its citizens). I have argued elsewhere that these two
sorts of countries should be measured on a different scale of moral ought
because of the issue of can. And that the wealthier countries should assist their
more indigent neighbors in their quest for fair economic development.3 The various
chapters in this volume address financial feasibility along with the strength of
human rights claims. But let us be clear about this: the claim is not simply that
public health is wider than infectious disease and sanitationbut that in any issue
that affects the general community, a plurality of considerations should be brought
forth under the guiding principle of ethics. Pure science/medicine needs a support-
ing principle and that is the inclusive ethical/social/political considerations brought
forth in this volume.
The structure of this volume basically follows a tripartite organization: Morality
and Politics, Money and Poverty, and Medical Need and Response. I will briefly
review the chapters in each part in order to provide the reader with a sense of what
he/she might expect. First, however, I would like to describe the rationale behind
each part of the book and how they are intended to relate to each other.
In Part I, Morality and Politics, there is recognition that public health policy is
not considered in a vacuum. There are at least two sorts of contexts that frame
international discussions on public health policy: morality and politics. In the realm
of morality we are trying to ascertain what ought to transpire. Such policy is framed
by individual (clinical) directions and group campaigns. By keeping the moral
standpoint in view (for example human rights) various policy options such as tor-
ture, privacy invasion, and cultural imperialism might be avoided. In this way

SECONDARY GOODS
Level OneLife Enhancing, medium to high-medium on embeddedness:
Basic Societal Respect
Equal Opportunity to Compete for the Prudential Goods of Society
Ability to pursue a life plan according to the Personal Worldview Imperative
Ability to participate equally as an agent in the Shared Community Worldview Imperative
Level TwoUseful, medium to low-medium embeddedness:
Ability to utilize ones real and portable property in the manner she chooses
Ability to gain from, and exploit, the consequences of ones labor regardless of starting point
Ability to pursue goods that are generally owned by most citizens, e.g., in the United States
today a telephone, television, and automobile would fit into this class
Level ThreeLuxurious, low embeddedness:
Ability to pursue goods that are pleasant even though they are far removed from action and from
the expectations of most citizens within a given country, e.g., in the United States today a
European vacation would fit into this class
Ability to exert ones will so that she might extract a disproportionate share of societys
resources for her own use
3
Boylan 2004, chapter 7.
Introduction: International Public Health: Morality, Politics, Poverty, War, Disease 3

morality is a guiding force in the creation of policy within the political sphere. At
the time of writing this chapter (2008) I have been a visiting fellow at the Center
for American Progress, a policy think tank in Washington, DC. I have noticed the
interplay of morality and politics first-hand as various initiatives are brought to
Capitol Hill and lobbied by designated members of the Center. It is not always the
case that members of Congress keep moral considerations in mindespecially
when they think there may be a practical agenda involved. In these cases politics
sets the terms of debate. This dynamic is not peculiar to the United States. In coun-
tries that are less open and democratic, the political influence is even higher. Thus,
the first facet of understanding how and why international public health policy is
formed requires an examination of the moral and political landscape.
The second topographical region to explore is how money and finance enter the
picture and whether poverty is really affected. Economists have declaimed for a
long time that everything depends upon money. One way this reality is expressed
in public policy concerns is via distributive justice. The way allocation occurs is
crucial to the projected outcome. There have been many ill-fated projects since
World War II that have not adequately taken into account the distribution formula
and its logical/moral justification; nor have they considered the way it might play
out (politics again). Both foundational issues and policy realities play a role in the
landscape architecture of this region.
The last area concerns actual public health problems. This final part of the book
intends to bring the two pedagogical themes of the first two areas: morality/politics
and money/politics. When we put it all together, what happens? The chapters of this
part generally point to actual and emerging issues that require actionnow. The
mode of argumentation is twofold. First the urgency of the problem is set out, and
second, the direction of policy solutions is suggested (consonant to the concerns
outlined in the first two parts of the book).
In the end, we hope that this volume will prove as useful as its progenitor in stimu-
lating discussion about public health that is strongly connected to moral theory.

Morality and Politics

This part begins with a chapter by Muireann Quigley and John Harris, Personal or
Public Health? This is a wonderful launching of the book into a key principle
of public health (and ethics in general). The authors set out one of the key
issues in public health that (given limited resources) monies allocated to public
health may come at the expense of monies for treating acute clinical care. This
clearly sets out a dichotomy of the community versus the individual. If one moves
too aggressively on either side, then bad results will follow. If the group is chosen
in their cardiovascular medicine example, then particular individuals may not get
the best care. If the group (particularly future groups), is given absolute priority,
then there is the possibility of Broomes paradox setting in where present patients
are abandoned for those of the future ad infinitum.
4 M. Boylan

Within the categories of (a) prevention of disease (primary prevention); (b) treatment
of disease once developed (rescue); and (c) the combination of treatment and prevention
of reoccurrence (rescue and secondary prevention), the authors seek a dialectical
tension of maximizing lives saved now without discounting future populations.
In Kristen Hesslers chapter, the discussion turns into a debate between the
interest-based human rights approach of Jonathan Mann and an agency-based
human rights approach advocated by James Griffin.4 The lack of specificity that
Hessler sees in the agency approach is rectified by the interest-based approach. One
example of this is with HIV-positive husbands abusing their wives. Public health
interventions that occur without regard for other, broader human rights concerns
will be counterproductive. This is Hesslers point on interest-based rights. It is
certainly possible that if one is so concentrated upon some abstract right or duty
that someone may fit the rule but not the intent, then no real progress is possible.
Hesslers call is for confronting individuals and populations, as they actually
livenot according to some statistical ledger that may miss everything.
Deryck Beyleveld and Shaun Pattinson begin their chapter with a declaration
that Medical research on personal data involves a conflict between moral interests
or values. On the one hand, research promises moral benefits that flow from the
acquisition of generalisable knowledge related to human health or treatment. On
the other hand, research participants have interests in being able to control the flow
and use of private information about themselves. Their way to adjudicate this con-
flict is to evaluate the scope of the rights claim in privacy versus research and then
to employ a singular normative ethical principle: Alan Gewirths Principle of
Generic Consistency (Act in accord with the generic rights of you recipients as
well as of yourself ) to settle the relative strength of each claim right.
The strategy that Beyleveld and Pattinson employ is to create the theoretical
framework for this analysis and then apply it to three sorts of cases: (a) infectious
disease studies, (b) contraceptive studies on those with severe infertility problems,
and (c) cancer studies. These sorts of cases provide empirical specification to the
theoretical structure that Beyleveld and Pattinson set out. In the end, these authors
argue vigorously that via their integrated approach of practice and theory, well-
grounded privacy claims will trump the sort of research claims against patients
privacy that are depicted in their examples.
In Wanda Teays chapter, we are presented with a very uncomfortable issue:
torture. Teays begins her chapter with how the issue of torture in the US War on
Terror takes control of ordinary people and tries to take over on the principle that
anything goes, kraterism.5 What is harmed is the protection of democratic liberty.
One cannot be inconsistent with her applications of moral principles of behavior. If
it is all right for us to torture you, then it is all right for you to torture usand by
extension torture is fine all around. And if it is fine for quasi-war situations, then it
may be fine whenever and wherever. But what does this leave us with?

4
For a possible compromise position between these two see: Boylan 2004, chapter 3.
5
I use the term kraterism to refer to a principle of distributive justiceto each according to his
ability to snatch it for himself, cf. Boylan 2004, chapter 7. The might makes right mentality is
behind this standpoint.
Introduction: International Public Health: Morality, Politics, Poverty, War, Disease 5

Of course this reductio argument is present to all. One clear response is to

pretend that we do not torture. Teays gives an interesting account of the noncogni-
tivist linguistic factors involved. These include euphemisms that transform torture
to harsh interrogation techniques. The victims are also transformed from prisoners
to detainees or illegal combatants or unlawful combatants or foreign com-
batants. All of these new categories are not described under Geneva Conventions
and so will circumvent some nominal legalisms of those who choose to be blind
about what is actually happening.
And what is actually happening is that torture is going on under the supervision
of medical personnel who have sworn an oath of doing no harm and promoting the
health of the patient. In the United States, a physician has a duty to report a parent
who he/she thinks has abused a child. This is not optional. It is part of the oath.
But in this wartime situation, it seems that the political needs of the ruler breach not
only the Hippocratic Oath and the Geneva Conventions, but also the safety of all
our captured troops and the general countrys concept of acceptable behavior. The
consequences in all of these categories breach public health. New precedents of
treating prisoners have abrogated public health guidelines. The result of this within
the context of the United States and the Iraq conflict is still a work in progress.
Finally, ending this part is a chapter from Laura Purdy on exporting the culture of
life. Purdy begins her chapter by highlighting two cases: (a) a 17-year-old girl with
an anencephalic fetus; and (b) a woman with an ectopic pregnancy that will kill her.
In both cases the countries in which the women live ban abortion. The result in the
first case is a child who will die and in the second case a mother who will die.
Such results seem rather counterintuitive to most peopleexcept the religious
right. In Purdys chapter, the religious right is depicted in American terms. But
around the world there are many fundamental religious movements which base
their assessment on public health policy upon their own private revelations from
God. Now the problem with this is rather simple. If we assume that democracy is
the fairest form of government (based upon its support of individual autonomy),
and if democracy can only work based upon externalist epistemologyoften called
transparency in the social spherethen the private internalist response, as such,
is contradictory to the externalist approach and is inherently antidemocratic.
The internalist approach is also subject to inconsistent application. For example,
Purdy notes that the so-called culture of life puts a high stake upon stopping abortion
(no matter what the circumstances) but is often blind to other life-threatening situa-
tionssuch as supporting the US war in Iraq which Pope John Paul II said violated
just war theory and so was not justifiable. In the United States, many who support the
culture of life oppose abortion, on the one hand, and support a war that violates just
war theory (the result being that all consequent deaths are murders), on the other. This
is a case of inconsistency.6 Purdys chapter calls for us to think about whether the
principle of separation of church and state is also a principle of public health.

6
The first element of this authors Personal Worldview Imperative is that one must act consistently.
This is necessary but not sufficient (the other points being: completeness, connection to a recognized
theory of the good, and commitment to live out the principles that one believes in).
6 M. Boylan

Money and Poverty

The next part of the book deals generally with issues of distributive justice and what
might be done to rectify it. Norman Daniels begins his chapter by citing some stark
inequalities in international public health: (a) life expectancy in Swaziland is one
half that enjoyed in Japan, (b) a child born in Angola has 73 times the chance of
dying before five than a similar child born in Norway, and (c) in sub-Saharan Africa
a mother has 100 times the chance of dying in childbirth than a similar mother in
the industrialized world. Since these distributions of health care are due to socially
controllable factors, they may be termed unjust.
There are three categories of these unjust inequalities:
1. Domestic injustice in the distribution of the socially controllable factors of popu-
lation health such as caste, race, gender, religion, etc.
2. International inequities such as poor natural resources, the susceptibility to
draught, flood, or disease vectors like mosquitoes carrying malaria or dengue
3. International practices from rule-making bodies such as those that permit a
medical brain drain from poorer countries to richer ones or trade agreements that
perpetuate poverty
How might these inequities be addressed? Two popular answers are statist solutions
focusing upon the internal practices of individual countries (championed by Nagel)
and cosmopolitan responses (such as Pogges minimalist approach). Daniels dis-
cusses the drawbacks of each as he fashions his own post-Rawlsian relational
approach that employs aspects of both statism and cosmopolitanism within the
context of interdependent institutional and national relationships. In this way, he
hopes that we may lessen these egregious international inequities in health care.
John-Stewart Gordon addresses the issue of poverty directly through an argu-
ment based upon the Aristotelian posit that all people strive for human flourishing.
Since this is a primary assumption, impediments to human flourishing (that can be
alleviatedsimilar to Daniels claim about social causes) are prima facie wrong.
Since the most concentrated areas of poverty in the world are in sub-Saharan
Africa, East Asia, and South America, Gordon focuses his attention on these.
The biggest challenge to relief from poverty in these areas of the world is ethical
relativism in which the brute fact of this poverty can often be explained away.
Instead, Gordon offers an argument that centers on the access to primary health care
as a global public good. Global public goods are: (a) public and nonexclusive, and
(b) universal in scope.
Gordons argument for the global public good of primary health care begins with
the fact of extreme poverty in these designated areas of interest. The argument
looks something like this: poverty lack of access to primary health care
unwarranted bodily harm loss of this basic human right loss of human dignity
diminishing human flourishing (the basic posit to which all humans strive).
Gordon then examines various possible objections to his argument and con-
cludes that if his argument holds, then it is incumbent upon the wealthy nations of
Introduction: International Public Health: Morality, Politics, Poverty, War, Disease 7

the world to provide poverty relief to poorer nationsparticularly in the area of

access to primary health care.
Christian Illies begins his chapter by citing the staggering statistic that almost a
billion people in the world today live on less than $1 a day. He then queries whether
this empirical fact alone should exhort us all to action. Why philosophize when help
is needed now?
The answer comes from the concurrent fact that though empirical experts can
tell us a lot about the problem as it now exists, they cannot define the direction of
our normative duty. This is the real and necessary job of philosophy. To this end
Illies suggests three areas of inquiry: (a) the precise normative ends that we wish to
achieve; (b) the rational justification of these ends; and (c) the way these ends relate
to our basic human inclination toward free agency.
In the first category, one may derive guidance from the structure of human
action. If the desire to act is fundamental to whom we are, then understanding this
structure will do more to clarify the nature of the ends we wish to encourage and
assist than mere broadly based imperatives such as Help the poor. Though we
should help the poor, the rather vacuous nature of the imperative gives little action-
guiding advice. Ethics can provide this greater specification so that we can transi-
tion from abstract directives to those that will be useful for productive action.
In the second category, Illies contends that we must go beyond emotional invo-
cations, such as were advocated by Schopenhauer, to a rationally based foundation.
This is because the emotionally based foundation is too dependent upon visual cues
that are rather haphazardsuch as seeing the picture of a starving child. Rather,
what is preferable is something like the transcendental deduction of the categorical
imperative that Kant put forth in part three of the Grundlegung.
As most commentators note, part three of the Grundlegung involves an interpre-
tation of human freedom (the third category). Illies looks to contemporary philoso-
pher Roger Brownsword to situate an account that can support a notion of human
dignity. With the freedom-to-dignity composition in hand, Illies can return to the
generating question by citing that this is the philosophers job: to situate our quest
to alleviate poverty within the context of increasing the moral freedom of agency.
David Cummiskey challenges the common dilemma between a market approach
and a government approach to delivering health care to its citizens. He sets out a
third alternative that is a social insurance model. This social insurance model
derives its origins from Germany that also created a hybrid model. The origins of
this system, Cummiskey suggests, had these characteristics:
1. Multiple health insurance funds (often called sickness funds) that are quasi-public,
independent (nongovernment), nonprofit organizations that collect revenues and
pay health care providers.
2. Funds were originally occupation-based but now also include regional funds,
including funds for small businesses and the self-employed. Membership in
funds is based either on type of occupation or geographical region.
3. Social insurance systems may include choice in fund membership and it may
include complete choice of health care providers.
8 M. Boylan

4. Representatives of employees and employers are responsible for managing the

funds within the constraints of general government mandates, which include
basic coverage standards.
5. The health (sickness) funds are financed primarily by employer and employee
contributions. Employee contributions are based on ability to pay through a per-
centage of wages or income, which is set by the funds and/or the government.
The funds and/or the government set employer contribution levels.
6. Social insurance systems provide insurance to all eligible persons without regard
to risk or previous health status. Social insurance systems include a system of
risk-pooling, and/or general government contributions, to promote equity across
funds.
7. Health insurance is usually compulsory for all either through the social insur-
ance funds or through private insurance. Employment-based funds include all
family members.
8. To achieve universal coverage, the employment-based social insurance systems
must be complemented by a general government-financed fund (or funds) for the
poor, unemployed, and retired.
Using this sort of model, Cummiskey advocates access to health care to be socially
secured. But the way to this end involves a pluralistic approach.
In order to avoid the problems with solely provided government insurance or a
government-run system as the one and final solution, Cummiskey encourages us to
think outside the box and try to provide the best of the market-based solutions
alongside basic minimums of patient care. This is an imaginative way to address
one of the most important aspects of public health: how to deliver basic primary
care to all citizens within a country.
The last selection in this part comes from Henrik Syse of Norway. In Henrik
Syses contribution we have the perspective of a unique individual who is both a
philosopher and a person of practical action (having worked in a prominant position
at the Central Bank of Norway). This sort of dual perspective is beneficial in offer-
ing suggestions on the role of money in public health efforts. Syses chapter looks
at the role that investors can play in modifying the behavior of the companies in
which they hold stocks. In Syses own role in the corporate-governance efforts of
the Government Pension Fund (formally called the Petroleum Fund) he has shown
that this theory really works.
At the beginning of his chapter, Syse asks where is the link between investors
and public health? Isnt it the role of fund managers simply to maximize profits
whether they are in cigarette companies or arms fabricators? Syse says, no. Because
of his concept of universal ownership (the large fund managers now have global
perspectives), Syse believes that the ownersin this case large stock fund manag-
ersshould be concerned (out of rational self-interest) about social injustice and
public health problems. This affirms John Donnes dictum that no man is an island
unto himself and that every man is a piece of the continent and the part of the main,
and Martin Luther King, Jr. who said from the Birmingham Jail that injustice any-
where is a threat to justice everywhere.
Introduction: International Public Health: Morality, Politics, Poverty, War, Disease 9

The investor tools to bring this about are: (a) company engagement and dialogue
with the company standard setters, (b) an acceptance of the division of labor
between the private and the public sector with a recognition that each can intelli-
gently help the other meet their goals, and (c) investors using their universal owner
insights for the benefit of all.
One of the very positive outcomes of reading Henrik Syses chapter is to know
that he, personally, has been positively involved in exactly what he is advocating.
There are many ways to bring about change and one of them is via the stock-
ownership system that is characteristic of modern economies.

Medical Need and Response

The third and final part of this book is devoted to specific individual public health
problems. Each chapter intends to address a particular need in the context of a theo-
retical approach and then suggests directions that might be taken within the
volumes broad understanding of public health.
In the first chapter, Margaret P. Battin, Charles B. Smith, Leslie P. Francis, and
Jay A. Jacobson set out a model of how to think about infectious disease that is
novel. They propose that we conceptualize the patient also as a vector. They call this
the patient-as-victim-and-vector (PVV) view. The PVV is a model of the way to
think about issues of policy and practice. They also conceive of five key steps to
bring about the sort of radical changes that can reduce infectious disease. These five
steps are: (a) national and international organizations and the development of the
collective will, (b) epidemiologic and healthcare infrastructure, (c) scientific devel-
opment, (d) religious, social, and cultural considerations (cf. Purdy), (e) legal and
social protections for individuals and groups (cf. Hessler and Beyleveld/Pattinson).
The practical suggestions always hearken back to the dual perspective of the PVV.
On the practical side, the PVV suggests that victim-hood can have a dual sense: a
person or group, or entire population, may be the victim of a diseasethis is the
primary sense of victim in the PVV viewbut may also be the victim, so to speak,
of policies, programs, prejudices, and other matters associated with disease, or both.
By employing the PVV the authors create a dialectical dynamic not too dissimilar to
my own use of dialectic in the way we accept novel moral theories.7 The result is
a radical prescription of how we grab hold of the problem of infectious disease and
really do something that works. Because of my own experience at the Center for
American Progress (a Washington, DC think tank) beginning in 2007, I have become
acutely aware of the necessity of blending dreaming and practical policy
solutions. This chapter introduces this part in a very creative/practical way.
In the second chapter, Rosemarie Tong relates her experience as cochair of the
North Carolina Institute of Medicine/Department of Public Health Task Force

7
Boylan 2004, 1014.
10 M. Boylan

assigned to develop ethical guidelines for an influenza pandemic. Like Henrik

Syses earlier article, this is one that has been forged in the trenches of creating
public policy. The potential threat of an influenza pandemic is real. Projections for
US deaths alone range from 200,000 to almost 2 million. Some other accounts
extend this by factors of up to 10. One would assume that including international
mortality figures, the result would increase significantly. Thus, for public health
policy and ethics it is important to develop guidelines for action in the times of a
crisis. In this case the national perspective is the focus. Tongs task force had this
as its goal. They began with evaluating the response to the SARS crisis in Canada.
In that case a report by Thompsons suggested procedural and substantive values:
PROCEDURAL: (a) reasonability, (b) openness, (c) inclusiveness, (d) responsiveness, and
(e) accountability; and SUBSTANTIVE: (a) individual liberty, (b) protection of the public
from harm, (c) proportionality, (d) privacy, (e) equity, (f) duty to provide care, (g) reciprocity,
(h) trust, (i) solidarity, and (j) stewardship

These key dispositions to action gave rise to five priorities for public health:
1. Priority should be given to assure the functioning of society.
2. Priority should be given to reduce the incidence or spread of disease.
3. Priority should be given to reduce illness, hospitalizations, and death due to the
influenza.
4. Priority should be given to protect people with the most years of life ahead
of them.
5. There should be no priority given for the distribution of limited health care
resources to ensure that everyone has an equal chance of being protected (NC
IOM/DPH Task Force 2007, 4950).
The action outcomes of these priorities lead to: social distancing, isolation, and
quarantine. These outcomes could effect many social events in society such as:
church services, entertainment venuesmovies, plays, concerts, and sports events.
The social impact could be huge.
In addition the strategies of triage would also be in play. What supervening con-
cept should rule this cascading series of events: deontology, utilitarianism,
privilege? Each of these has proponents and critics. Instead of these usual suspects,
Tong offers the ethic of care as the guiding principle in times of infectious crisis.
Michael J. Selgelid, Paul M. Kelly, and Adrian Sleigh contend in their chapter that
tuberculosis (TB; a bacterial disease that kills many peopleespecially in the poor
countries of the world rivaling or surpassing AIDS) should be upgraded to a front-line
emphasis in the international concern for public health infectious diseases. This is
partly because TB is a big killer. Another problem is that strategies for its control have
often fallen prey to human rights and liberty abuses in the strategies of disease control.
Finally, it is necessary to send out a clarion call for TB focus since the victims are
primarily from subsistent societies. These souls have no automatic voice on the world
stage. Thus, they need champions who will put forward their plight.
The authors assert that one third of the worlds population (around 2 billion
people) have at least latent-TB. This fact alone would prove the authors case.
Introduction: International Public Health: Morality, Politics, Poverty, War, Disease 11

The poor suffer the most. Ninety-eight percent of the worlds TB fatalities come
from subsistent societies.
The suggested solution is moderate pluralism that identifies a panoply of values
and issues and seeks to bypass the traditional conflicts between utility and liberty.
TB reduction (done in the right way) can do this and rid the world of an insidious
threat to international health.
This approach aims to identify the plurality of (intrinsic) values at stake in the
context under study and strike a balance between potentially conflicting values
without giving absolute priority to any one value in particular.
Simona Giorandos chapter confronts a lesser-known area of public health:
atypical gender identity organization (AGIO). This condition occurs when ones
gender identity is incongruous with his/her phenotype. For example, ones gender
identity might be as a male but ones body has female genitalia (or vice versa).
Though this appears to be a rare disorder (though how rare is difficult to ascertain
because of its general social unacceptability leading to underreporting), it has
clear public health consequences. For one thing, this terrible incongruence
between body and mind often forces such individuals to emigrate to countries that
offer operations to put the body in sync with the mind. However, such operations
are expensive. To pay for them often requires one to become a prostitute and/or
enter into the life of drugs and crime. This increases a public health problem. But
what choice do many of these individuals really have? They are personally miser-
able to the point of life and death. They are discriminated against in society and
subject to abuse and violence.
Giorando explores the tricky avenues of treatment before puberty with its
medical effects and ethical snares. She suggests a general approach that may be
effective for public health. We must assess the problem and cut through social
prejudices in order to take general steps for the soundest medical treatment within
an ethical context. This is a work in progress. Giorandos chapter points a way to
the future.
Finally, to round out the book I present a chapter that takes up a traditional
problem in public health: clean water and sanitation. These prescriptions have
become engrained in public health aspirational practice in the developed world:
the wealthiest 15 or so countries in the world. For these states, this chapter is
preaching to the choir (though even among these countries there are problems
for example, in the United States clean water has recently been shown to be
problem in our nations capital, Washington, DC and in Milwaukee, Wisconsin
(around the 22nd largest city in the USA)). Thus, even though the thrust of my
chapter is addressed to the poor countries of the world, it is not limited to them.
Some wealthy countries are often slackespecially when the victims of unclean
water and improper sanitation are the invisible souls in society: the underclass.
This is unacceptable on moral grounds.
The chapter attempts to describe the problem in a snapshot of the recent
past and the foreseeable future with some realistic suggestions on what we can
do now.
12 M. Boylan

Conclusion

The volume as a whole can be accurately characterized as both pluralistic in its

methodology and proactive in its exhortations for change: right now! The general
tenor of the volume is to view public health and human rights as inextricably
twined. The rationale of public health intervention cannot simply be convenience
or personal advantage.8 We are in this together. As Henrik Syse asserts, we have a
universal ownership of the planet. This ownership entails responsibilities. We have
to step up to these responsibilities. The time is now. Readers of this book take up
the gauntlet and vigorously support public health initiativeslike those advocated
in this bookso that we might make our planet more habitable and just for
everyone!

8
For an extended discussion of this argument see the introduction to the predecessor volume to
this volume: Public Health Policy and Ethics, edited by Michael Boylan (Dordrecht: Kluwer/
Springer, 2004).
 Part I
Morality and Politics
Personal or Public Health?

Muireann Quigley and John Harris

Abstract Intuitively we feel that we ought (to attempt) to save the lives, or
ameliorate the suffering, of identifiable individuals where we can. But this comes
at a price. It means that there may not be any resources to save the lives of others
in similar situations in the future. Or worse, there may not be enough resources left
to prevent others from ending up in similar situations in the future. This chapter
asks whether this is justifiable or whether we would be better served focusing on
public health in the form of preventative medicine. It looks briefly at the supposed
difference between benefiting individuals and benefiting populations by consider-
ing the difference between interventions aimed at rescue and those which are
preventative. It then considers the rule of rescue in the health care setting, and
looks at some of the reasons stemming from this that we might have for allocating
resources to rescue interventions. If these reasons do not provide adequate justifi-
cation for preferring these types of interventions, then the implication is that our
current mode of resource allocation may need to be revised in favour of a more
public health-oriented model.

Keywords Public health, individual health, rule of rescue, identifiable, non-

identifiable, statistical victims, discounting the future

Introduction

Imagine the following scenario. The government is worried about their current
spending on health care. There is not enough money to pay for all the staff, services,
health care interventions, or medicines that seem to be required by the citizens. The
minister for health feels that there might be a better, more efficient way to structure
the health care budget. She thinks that there must be a way to make the citizens
healthier and prevent major diseases (heart disease, diabetes, respiratory problems)
from developing within the population. She believes that this would have the two-
fold effect of decreasing morbidity and mortality and of cutting expenditure on
acute medical services.

M. Boylan (ed.) International Public Health Policy and Ethics, 15

Springer Science + Business Media B.V. 2008
16 M. Quigley, J. Harris

To test this she brings together some leading experts in public health and
preventative medicine, including epidemiologists, health educators, biostatisticians,
nutritionists, and economists. She has even taken the recklessly extravagant step of
including a couple of ethicists on the team. The team assure her that they can come
up with a public health strategy that could raise the level of health of the population
within a generation or two. There is, however, a significant problem with their plan:
it would require a major redeployment in health care resources from the acute
services to public health interventions. The ethicists are unsure if this would be a
morally justifiable course of action since it would literally mean the sacrifice of the
health and well-being (and perhaps lives) of some patients in the near future for
those of some unidentifiable ones at some further point in time.
Intuitively we feel that we ought (to attempt) to save the lives, or ameliorate the
suffering, of identifiable individuals where we can. But this comes at a price. It
means that there may not be any resources to save the lives of others in similar
situations in the future. Or worse, there may not be enough resources left to prevent
others from ending up in similar situations in the future. This chapter asks whether
this is justifiable or whether we would be better served focusing on public health in
the form of preventative medicine. To do this we briefly look at the supposed
difference between benefiting individuals and benefiting populations, considering
the difference between interventions aimed at rescue and those that are preventa-
tive. We then move on to consider the rule of rescue in the health care setting, and
look at some of the reasons stemming from this that we might have for allocating
resources to rescue interventions. If these reasons do not provide adequate justifica-
tion for preferring these types of interventions, then the implication is that our
current mode of resource allocation may need to be revised in favour of a more
public health-oriented model.

Benefiting Individuals and Benefiting Populations

The Institute of Medicine in the United States has stated that public health medi-
cine encompasses a range of interlinked fields including epidemiology, health
promotion and education, public health administration, international health,
maternal and child health, biostatistics, environmental health, and nutrition
(Institute of Medicine 1988, 1). Whatever the multiple and varied subspecialties
that feed into public health and its delivery, public health in its simplest form is
just what it says on the tin: it is that aspect of health care which is concerned with
the health of the public.
It has been noted by a number of commentators that public health medicine, and
hence public health ethics, encompasses issues that are different from those in the
normal clinical relationship (Bayer and Fairchild 2004; Boylan 2004; Charlton
1993; Childress et al. 2002). The typical clinical encounter involves a one-to-one
consultation between the patient and health care professional. The focus is on
the individual health care needs of that patient, and the best way to address and
Personal or Public Health? 17

manage those. In the consultation the physician directs his attention only towards
that particular patient and deploys health care resources with his patient in mind.
On the other hand, public health endeavours are aimed at the population as a
whole, or specific populations such as children, the elderly, women, or those at risk
of heart disease. The aim is not to treat any individual patient, but to put in place
interventions that will show benefit at the population level. This does not necessarily
mean that every person within the target population will benefit from the
intervention, but that overall the target health outcome will be achieved. This
approach requires that we treat sufficient numbers for the effect to be demonstrable
at the population level. An example of this might be the current treatment regime
for cardiovascular disease in the United Kingdom. The aim is to put everyone who
has a certain level of cardiovascular risk on the same drug regime in order to treat
sufficient numbers to decrease the countrys overall cardiovascular burden. We may
never know whether or not a particular individual has benefited from the regime,
but we can demonstrate the effect on the population.
If we are interested in the health of the people, in the health of each and every
person, then we are necessarily interested in health at the population level. Health
care policies reflecting this would encompass strategies and interventions aimed at
improving health for the population as a whole. Examples of these types of inter-
ventions would be national immunisation programmes, health education programmes,
and screening programmes. The concept of patient autonomy, which derives from
the individual patient model, can be seen to be in direct conflict with an ideal
model of public health. In this model individuals would not be able to opt out of the
public health endeavours of their country. This is because optimal public health
outcomes require maximal participation in order to get maximal health benefit for
the population at large.
These two different approaches, individualised health and public health, are not
completely independent of one another. They will in fact impact on each other.
After all, any benefits seen at the population level are necessarily the sum of
individual effects, and any benefit brought about through individual measures will
contribute to the whole. However, the health care strategies in each approach are
often in conflict. It can be seen as the difference between a bottom-up and a top-
down approach to health care. This distinction arises because when we treat
individuals we are looking at the specifics of their situation, responding to this, and
treating accordingly. The individual outcomes and effects of this contribute to, and
add up to give us, an aggregate population result. Conversely when practising
public health medicine the broader picture is examined, looking at general measures
that can be instituted across a broad range of the population, and working down to
the minutiae. This has the end result that the benefits of the intervention trickle
down to a proportion of the individuals in the population, although we may never
know which ones exactly.
So far we have been talking about individual health and public health and have
seen that they are in fact interconnected. If we look at the types of interventions
which can be utilised to generate the required health outcomes, we can place them
into three loosely defined categories: (1) those that are aimed at preventing a
18 M. Quigley, J. Harris

disease or illness (primary prevention), (2) those that treat an illness (or its
symptoms) once it has developed (rescue), and (3) those that treat an illness or
its symptoms, but also help to prevent recurrence in the future (rescue/secondary
prevention). Of these the preventative health care measures seem to operate at a
cost-effective level (for examples of this see Schwappach et al. 2007; Segal et al.
1998; and Lindgren et al. 2003). Taking the example of coronary artery disease we
can see which interventions would fall into which category. Health education cam-
paigns focusing on diet, exercise, and smoking can be seen as primary preventative
measures, as can drugs such as statins, which decrease a persons overall cardiovas-
cular risk. Interventions such as thrombolytic therapy to break down blood clots
within the coronary arteries can be seen as rescue medicines. Such interventions
are administered when the patient presents in the acute setting and are aimed at the
immediate relief of symptoms and are also often life-saving. Other interventions
such as coronary artery bypass grafts (CABGs) can also be seen as a form of rescue
medicine but they also play a role in the secondary prevention of the disease.
In a public health approach focusing solely on primary prevention, every indi-
vidual would probably stand to gain certain health benefits; however, they would
not be entitled to rescue interventions should they need one. Alternatively on the
rescue model of health care each individual can expect specific large health benefits
should they need such an intervention, but this might have the consequence that
everyone else is left in a lesser state of health than they would be on the public
health model. It is for these reasons that rescue medicine can be portrayed as
being in conflict with the common good. Any redirection of resources away from
tertiary health care would necessarily have the effect that some people would not
be able to access rescue interventions should they need them. While it is possible
that the overall effect would be to increase the level of health of the population as
a whole, and hence individuals within the population (Diehr et al. 2007; Pamuk
et al. 2004), such a drastic move requires justification. In order to do this we want
to look at the reasons we have to favour rescue medicine and ask whether the
arguments for this stand up to scrutiny.
Two of the strongest reasons why we might want to favour allocating resources
to rescue interventions are (1) those individuals who benefit from rescue interven-
tions are generally identifiable, whereas those who would benefit from interventions
aimed at the population at large are statistical and non-identifiable; and (2) individ-
uals benefit from rescue interventions now or in the near future, whereas those who
would benefit from an input of resources into prevention measures are in the more
distant future. We now briefly turn to look at the rules of rescue (RR) before
examining each of these in turn.

Rule of Rescue

McKie and Richardson nicely explicate one of the prevailing views on rescue say-
ing that the RR expresses the view that we cannot ignore certain situations because
of cost or low QALY [quality-adjusted life years] benefit (2003, 2409). While
Personal or Public Health? 19

Jonsen tells us that our moral response to the imminence of death demands that we
rescue the doomed (1986, 174) and that those doomed to death are certainly quite
visible individuals (1986, 173). However, he claims that the effect of this is that
the rational effort to evaluate the efficacy and costs, the burdens and benefits, of the pano-
ply of medical technologies an effort essential to just and fair allocation encounters the
straitened confines of the rule of rescue. (Jonsen 1986, 174)

It is generally accepted that where we can save the life of an endangered person at
little or no risk to ourselves, we are morally obliged to do so. Where there is little
or marginal cost to ourselves, it is reasonable to posit that this also applies to cases
where a persons life is not in danger but we could ameliorate their suffering.
The oft-quoted hypothetical example is of the child drowning in a pond. You can
save the childs life at no risk to yourself and at no cost save some wet clothes. Are
you morally obliged to save the child? We can think of no reason why this would
not be the case. An analogous case in the health care setting might be that of the
collapsed patient. You are walking along the hospital corridor and find a collapsed
patient who is not breathing and you cannot find a pulse. You are on your way to
lunch when you find the patient: Should you stay and administer cardiopulmonary
resuscitation (CPR) until further help arrives? You will be delayed in getting your
lunch but the dire need of the collapsed individual almost certainly creates a moral
duty that you stop and help him or her.
However, such a case with its clear moral imperative is not analogous to all
instances of rescue in the health care setting. This is because not all patients can
be saved or have their suffering ameliorated at no risk to others or at no cost to the
system. If resources are utilised performing a heart transplant, then, where there are
limited resources, those same resources are no longer available to spend on others
who might need them. This does not simply mean that another patient who might
have needed a heart transplant cannot have one, but, perhaps, that 20 people who
might have benefited from diabetes medication cannot be treated. Or it might mean
that 100 people who might never have developed diabetes, maybe because of a
health promotion campaign, do in fact go on to develop diabetes. Wherever health
care resources are expended there will be an opportunity cost; some other person or
persons will suffer a health risk or cost because of the decision to utilise those
resources in a particular manner.
Of course, when it comes to rescue situations each individual could decide that
they are willing to accept the associated risks and/or opportunity cost, even where
they are significant, of the attempt. For example, some persons may still believe they
should try and save the child in the pond from drowning when the weather is stormy
and there is a good chance that they themselves might suffer an injury or even die in
the attempt. Similarly an individual who freely decides to donate a kidney for trans-
plantation willingly undergoes the associated risk of illness (and even death) involved
in this act. What we cannot do is force people to take on those risks that would place
their own lives or health in danger. As in the above examples it would be very nice of
them to do so, but they cannot be seen as anything other than supererogatory acts.
If we go back to the pond analogy it is clear that if a rescue can be affected
without personal risk, and with minimal inconvenience and cost, such a rescue
20 M. Quigley, J. Harris

would be morally obligatory (although not legally binding in the United Kingdom).1
If we were to suggest that an individual was morally obliged to attempt the rescue
even though they could be left with a serious injury, or might even die, this could
or would be countered by pointing out the claim that the conduct almost certainly
is beyond what could reasonably be understood as obligatory. If by attempting the
rescue there would be no danger to you but 20 other people would suffer adverse
health effects because of it (perhaps you need them to act as stepping stones in
the water for you, thereby leading to some anoxic brain injury), and we were still to
suggest that it was a moral obligation, we might well be accused of reckless endan-
germent. However, this is what happens when decisions are made to spend money
on expensive rescue treatments. This is because the resources that could have been
used to improve the health of, or save the lives of, others are used up. They are used
up without asking each and every person if they are willing to put their chance at
health or their chance to be saved at risk for others (Hope 2001, 184).
Having said that, it may be the case that there are factors which require us to
allocate health care resources in this manner. We mentioned two possibilities
regarding this earlier: the first is that in rescue situations the victim is generally
identifiable, and the second is when they are likely to be in need.

Identifiable, Non-identifiable, and Statistical Victims

One of the reasons why we appear to be willing to spend a considerable portion of

the health care budget on what can be seen as rescue interventions may be connected
to what Jenni and Lowenstein (1997) have termed the identifiable victim effect.
This is why the society is willing to spend far more money to save the lives of
identifiable victims than to save statistical victims (1997, 236). In the health care
context this can be characterised as the conflict over whether to use some of the
available resources to administer a rescue intervention that will benefit a particular
patient (e.g. thrombolysis or emergency angioplasty for a myocardial infarction), or
whether to use them for a preventative intervention that will benefit a proportion
of patients within a group but we cannot know who has been benefited (Hope
2001, 181) (e.g. health promotion campaigns or the use of statins).
This can be portrayed as competing claims between actual people and mere
statistics. When characterised in this manner, the resource allocation problem
appears simple: surely it would be morally remiss of us if we did not choose to save
actual people. These are real identifiable individuals and we can clearly see their
suffering and the risks that threaten them. On the other hand, what are they compet-
ing with? A bunch of numbers in the context of which we cannot be sure that
anybody is actually at risk or of who would actually benefit were we to take action.
While it might be easier for us to think of the rescue versus prevention problem in
these terms, it is not the whole story.

1
It would be legally binding in France.
Personal or Public Health? 21

When talking about who might benefit (or not) from our resource allocation
decisions there are actually three positions that the beneficiary might occupy. They
might be (1) an identifiable individual; (2) a non-identifiable but real individual; or
(3) a statistical possibility. Being non-identifiable could be equated with merely
being a statistical possibility leading us to favour those individuals who we can
identify in our considerations. However, as the following examples will show, the
two categories are not synonymous and, therefore, ought not to be treated as such.
Scenario A: There is a sniper on the roof of a building. He has been contracted
to kill a particular target. He knows the name and what the individual looks like. He
spots his target and shoots. This person can be considered to be an identifiable
individual to the sniper in this situation.
Scenario B: Again a sniper is on the roof of a building. He has not been hired
to kill anybody; he simply has a murderous nature. He shoots randomly into the
crowd below and kills one of them. This individual was not identifiable to the
sniper but was real, thereby suffering the real consequences of the snipers
actions.
Scenario C: In Arthur Millers play All My Sons2 the Keller family and in
particular Steve Keller, who does not appear in the play, were responsible for manu-
facturing and shipping defective cylinder heads for aircraft in the Second World
War with the result that pilots were killed. Joe Keller admits his part in the killings:
I was the beast; the guy who sold cracked cylinder heads to the Army Air Force;
the guy who made twenty-one P-40s crash in Australia. As he says of Steve Keller
his partner in crime: I know he meant no harm. Neither of them intended or
planned the deaths of those pilots. But such excuses do not wash with the next gen-
eration of the family. As Ann Keller says of her father: He knowingly shipped out
parts that would crash an airplane, and her brother Chris says bluntly: He mur-
dered twenty one pilots (Miller 1961, 117). The Kellers did not know for sure that
anyone would die and they did not know how many or who precisely would be
adversely affected by their actions. At the end of the play Joe Keller discovers that
his own son, Larry, also a pilot in the war, had committed suicide when he learned
of the family complicity in murder. Trying to make Joe and his mother take respon-
sibility, Larrys brother Chris repeats his indictment of his father: Larry didnt kill
himself to make you and Dad sorry, and his mother responds: What more can we
be? Chriss answer carries the message of the play: You can be better. Once and
for all you can know that there is a universe of people outside and youre responsi-
ble to it, and unless you know that, you threw away your son, because thats why
he died (Miller 1961, 170).
This is an example of a statistical possibility because not only can we not identify
those who might be affected, but it is uncertain that anyone will be affected at all.
In addition, it is also extremely difficult to determine the probability that the event
might happen at all or of the risk to those possible people who might be affected.
It is clear from these examples that there is a distinction between identifiable,

2
For discussion of this point in a related context see Brazier and Harris (1996).
22 M. Quigley, J. Harris

non-identifiable, and statistical victims. Such a distinction within the health care
setting can be seen in the following examples.
Scenario D: A child presents to the emergency department with signs and symp-
toms suggestive of meningococcal meningitis. A lumbar puncture is performed and
the meningococcal organism is confirmed on gram stain. The child is treated with
intensive intervention including antibiotics. Here again there is an identifiable
individual.
Scenario E: Under the United Kingdoms national immunisation programme
the primary immunisations (diphtheria, tetanus, pertussis, polio, and haemophilus
influenzae type B) are given at two, three, and four months of age.3 The effects of
these immunisations can be measured at a population level but we cannot know
exactly who has benefited from them.4 Such an intervention benefits non-identified
but nonetheless real people.5
Scenario F: Tamiflu (oseltamivir) is an antiviral drug that has been used to treat
influenza types A and B. It has also been used to treat patients who contracted the
H5N1 strain of the avian flu virus. The UK government has ordered enough of the
drug to treat 25% of the population in the event of an avian flu pandemic.
In this case there are three areas of great uncertainty. The first is uncertainty
about the actual risk to the population from H5N1. This is because so far there have
been no reported cases of human-to-human transmission; in all of these cases the
virus was transmitted from bird to human. Additionally if human-to-human
transmission occurs, we have no idea what the effect on the virulence of the strain
might be. The second cause of uncertainty is that surrounding the efficacy of the
drug itself. There is scant evidence that oseltamivir is effective in suppressing viral
replication of H5N1 (De Jong et al. 2005) in the cases where it has been used.
Given this it is even less evident what its efficacy might be on a mutated human-to-
human strain. The third, and perhaps greatest, area of uncertainty is the fact that we
cannot even begin to determine the population that might benefit from this interven-
tion. We know that 25% of the population will stand to benefit but, as we do not
know when (or even if) such a pandemic might occur, we cannot even know what
the demographics of the population will be at that time. This all adds up to a
situation where we are in effect treating a statistical possibility.
It is clear from the above examples that in the health care arena we are mostly
talking about the competing claims, not of fictional persons versus actual persons but
of real persons versus real persons, identifiable or not. Given this we need to ask
whether there is anything in particular about being identifiable that might permit us
to justifiably favour those who are identifiable in our resource allocation decisions.

3
See http://www.immunisation.nhs.uk/
4
See http://www.immunisation.nhs.uk/article.php?id=400 for information on specific diseases and
vaccines.
5
Although in principle they could be identified.
Personal or Public Health? 23

The first factor might be knowledge of some personal attribute held by that person,
such as their name, physical description, or age demographic. This seems an
unlikely candidate for a justifiable reason to distinguish between people for treat-
ment. Using criteria such as these would be tantamount to racism, sexism, and
ageism and would simply be discrimination without a morally relevant basis.
The second possibility might be distance. It has been suggested that we owe
greater moral obligations to those who are nearer to us than those who are far away
(for a discussion of this see Kamm, 2000). However, while the criterion of near-
ness might hold some moral sway when it comes to an individual persons
obligation to help those in need (after all if you are near and can help then you
should), it seems unlikely that it ought to be taken into account when making
resource allocation decisions. The reason for this is that the institutions that make
the allocation decisions, be they the government in the United Kingdom or the state
legislatures elsewhere, cannot reasonably be said to owe greater obligations to
those who live nearer their seat of power than to those who live further away.
It would be odd indeed if the UK government gave priority in its decision making
on health, security, or education to those living in or around London.6 The govern-
ment is an institution with no geographical locus to speak of when it comes to
describing either its duties towards its citizens or its power over them. If we are to
utilise the concept of nearness at all in this instance, then conceptually we would
have to see it as being equally proximate to all its citizens. Moreover, distance is
not simply a geographical concept. Those who are expensive to treat are also in a
real sense more distant from us, not least because those geographically more distant
from treatment centres are also more expensive to treat (Harris 1996).
Perhaps then the characteristic that inclines us towards rescue is not the fact that
such individuals are identifiable but that their need is more pressing. In general, those
identifiable individuals who are in need of rescue interventions are in need of them
now (thus contributing to our ability to identify them), whereas those non-identifiable
persons who might be helped will benefit not now but at some time in the future. We,
therefore, need to ask whether it might be morally justifiable to favour rescue inter-
ventions that affect people now rather than preventative ones which will affect either
people in the future or future people (people who as yet do not exist).

Discounting the Future

Many people believe that we have more powerful reasons to do things now rather
than later, and that harms are less terrible the further into the future they occur and
that the benefits are less beneficial. If the future should be discounted in favour of
the present, we would have moral reasons (or economic/accounting reasons) for

6
Although it has been accused of doing exactly this while giving a lesser priority to more remote
areas of the country.
24 M. Quigley, J. Harris

rescuing individuals now rather than initiating public health measures which would
protect people in the future or future people.
But why should the future come at a discount?7 Let us start with the problem of
duties to non-existent, future people.
We believe that this problem about duties to future, non-existent people is
largely illusory. While future people have no rights and do not exist to make claims
upon us now, it does not follow that we cannot harm them and therefore that they
are not covered by all our person-affecting duties, including our duty not to harm
others. Consider, if we put a slow-acting poison into the water supply, a poison that
will not become active for 200 years, it will kill no one presently alive but everyone
who drinks the water in 200 years time. Such an action would not be harmless.
While we cannot identify in the sense of name those who will die, we can identify
them in another sense. They are all those who will derive their water supply from
x, y, and z reservoirs in 200 years time. Since our action will affect persons, future
persons, it is part of person-affecting morality, and since it will cause a particularly
harmful form of harm, namely death, it is covered by our duty not to harm and kill
others. This sort of future harm cannot be discountable.
What is true of harms is also true of benefits; the two are the Janus faces of the
duties we have to others.8 Just as we have the same reason not to cause future harms
as we have not to cause present harms, we have the same reason to confer future
benefits as we have to confer present ones. John Broome has some interesting
thoughts which are relevant here (1994).
Broome agrees with Derek Parfits, surely unassailable, claim that equal harms
to well-being count the same whenever they occur. There are, however, problems
about what counts as a harm to well-being and how to quantify such harms:
Some commodities represent a constant quantity of well-being whenever they occur; let us
call them constant-well-being commodities. Saving peoples lives is plausibly another
example of a constant-well-being commodity; on average, saving one persons life in one
hundred years will presumably add just as much well-being to the world as saving one per-
sons life now. Granted that well-being ought not to be discounted, constant-well-being
commodities ought not to be discounted. Lifesaving in the future will make the same
contribution to well-being as lifesaving in the present. Certainly future lifesaving is cheaper
than present lifesaving, but this is not a reason for valuing it less. (Broome 1994, 149)

So far so good. However, Broome points up a paradox:

If we can convert a quantity of lifesaving now into a greater quantity next year, and if the
lifesaving next year is just as valuable as lifesaving now, the conclusion we have to draw
is that lifesaving should be deferred. We should withdraw resources from lifesaving today,
and apply them to saving more lives next year. We should also defer lifesaving next year
in order to save yet more lives the year after. We will end up postponing all livesaving
to the indefinite future, which never comes. So we will end up saving no lives at all.
(Broome 1994, 150)

7
In this section we benefit from the work of our colleague Sarah Chan. Some of the ideas here pre-
sented are to be found in Chan and Harris (in press). See also Parfit (1984) and Broome (1994).
8
As argued in Harris (1980).
Personal or Public Health? 25

Broome notes that this is ridiculous and concludes it is a paradox we must resolve
and assays one possible solution:
Lifesaving may not be a constant-well-being commodity. Undoubtedly, saving some
peoples lives adds more well-being to the world than saving other peoples. Saving a
twenty-year old with a long and happy future ahead of her adds more well-being than
saving a ninety-year-old with little left to look forward to. (Broome 1994, 150)

Broomes big mistake is commodifying life, and his conception of what life-saving
means commodifies life absolutely. He identifies the value of the life of a person as
the quantum of well-being that life adds to the world. For Broome the reason to
save a life is to maximise the amount of well-being such an action adds to the
world. This is seeing the value of life exclusively as a commodity, as the amount of
well-being it contains, and the value of saving a life as the quantum of well-being
that life-saving adds to the world.
But well-being, or indeed welfare, is not an end in itself; it is an instrumental
good, not a good that benefits the world in proportion to the amount of it there is
floating about, but rather a good that benefits the individual person whose being is
well (or otherwise). Well-being is the welfare of a being, not a quantum of abstract
goodness. Concern for, or promotion of, well-being or welfare is then a state of
being of a person, not a state of the world. It complements an individuals autonomy
in that it provides the conditions in which autonomy can flourish and lives be given
their own unique meaning. Well-being and welfare thus conceived has a point, as
does concern for the welfare of others; it is not simply a good in itself. We need
welfare, broadly conceived in terms of health, freedom from pain, mobility, shelter,
nourishment, and so on, because these things create the conditions which not only
maximise autonomy, but also give autonomy maximum scope for operation. In this
way welfare is liberating; it is what we need to be able to pursue our lives not only
to best advantage but also in our own way (Harris 2003). The value of a life is
overwhelming to the individual whose life it is, and to that person, the loss of their
life is the loss of everything, not simply of something or some things. This is why,
as one of the authors of this chapter has argued on a number of occasions, including
against other ideas of John Broome, the value of a life is not proportional to the
amount of good or well-being or welfare it contains, nor to the amount of lifetime
enjoyed or in prospect for the individual whose life it is. For that individual,
however well (or ill) their being, or however long or short their life or lifetime in
prospect, it is the loss of everything. That is why it is not simply wrong-headed but
also wrongful to value lives differentially according to quality or quantity of life.
If the millionaire and the pauper both lose all they have in the stock-market
crash, in one way of thinking about the loss, each has suffered the same degree of
loss, each has lost everything. In another, each has suffered a different quantity of
loss measured by the total sum lost. There is no straightforward way of reconciling
these different approaches to the assessment of loss. If we are searching for an
equitable approach to loss, it is not obvious that we should devote resources
allocated to loss minimisation to ensuring that the millionaire is protected rather
than the pauper. The same is true of health gain or indeed of well-being or welfare.
Even if it is agreed that resources devoted to welfare or health care are resources
26 M. Quigley, J. Harris

devoted to minimising the loss of health or welfare or well-being, it could not be

demonstrated that the person who stands to lose more well-being or more life years
if they die prematurely stands to suffer a greater loss than the person who has less
well-being or life expectancy.
If you and I are competitors for rescue or life-saving care and I have already, or
will have after the rescue, more well-being or better welfare than you, it seems unfair
to automatically prefer to satisfy my needs rather than yours. This is because both of
us will receive something that is significant and important to us. Why should my life
be judged more worth saving because I am more healthy or happy or have greater
well-being, rather than because I am more intelligent or more useful? Arguments can
be (and have been) made on both sides, but to define need, for example, in terms of
capacity to benefit and then argue that the greater the well-being deliverable by
rescue, the greater is the need for rescue (or the greater is the persons interest in
receiving rescue) is just to beg the crucial question (Harris 1997).
The bearing of all of this on the question of the rival merits of rescue versus
prevention is that regardless of age, life expectancy, or geographical or temporal
proximity the value of a persons life remains constant and the moral reasons for
rescue are equally strong. As Mill has reminded us, Jeremy Bentham memorably
said each is to count for one and none for more than one.9 This should be the gold
standard for rescue and for treatment now or in the future. It follows that prevention
is not better than cure, but neither is cure better than prevention. While I would
prefer a possible disease or accident to be prevented rather than wait for the neces-
sity for cure, if I am already suffering I benefit as much from cure of this cause of
suffering as I would by prevention of other comparable future suffering. There is
nothing to choose between curing my present suffering and preventing the
comparable future suffering of someone else.
If we now consider the case in which the future people do already exist but are
different, we can see that there are now good reasons in principle to discount the
future although some reasons connected with probability of outcome remain.
Intuitively it seems correct that a duty to rescue X today is more pressing than
one to rescue Y in a years time. But it seems likely that this is due to the probabilistic
intuition that during the intervening year something else may occur to render our
duty to rescue Y unnecessary or irrelevant. If we could say with 100% certainty that
without our intervention X and Y would both suffer equal injury but at different
times, it is hard to see why our obligation to X is greater than that to Y. The reason-
ing that one can distance oneself from future suffering only applies in the absence
of forethought: future pain will hurt in the future, and choosing to avoid the present
pain does not make the overall suffering any less. In fact one might argue that it
would be better to undergo the pain now and hence avoid the mental torment caused
by living in dread of the pain to come. In the case of saving lives, matters may be

9
The source for this famous remark of Bentham is his contemporary John Stuart Mill (1962, 319)
in his Utilitarianism. See also Harris and Sulston (2004). For more on innumeracy in ethics see
Taurek (1977) and Parfit (1978).
Personal or Public Health? 27

slightly different. It is clear that future-me will not exist if current-me is not res-
cued: the dereliction of one duty precludes the exercise of the other. This is not,
however, the case when the present and future duties are owed to different parties.
However, the ethics of discounting the future where different people are to
receive the benefits of rescue is complicated by two further considerations. The first
is easily dealt with. While it is true that we are, in some ways, constantly changing,
can we say that Y in one years time exists now in the person of Y? If, and in so far
as this is right, the problem of my trade-off between present and future rescue from
harm may reduce to the problem of whether saving X now or Y in the future have
different priorities. We do not believe so because even in the unlikely event that
me in one (or even 20) years time is not really me, there will be enough psycho-
logical continuity between the two of us to make it rational for me now to have a
strong interest in what happens to me modified in 20 years.10 More significantly, if
we opt to rescue X instead of Y, Y still gets an extra year of life. On a purely num-
bers basis, with no way of determining whose life is of greater benefit, this might
make it better to rescue X. However, we would need theories about how the value
of a life is varied by life expectancy or lifetime lived, not to mention cost of rescue
and many other features, before this conundrum could be finally resolved.11
Other things being equal, if each counts for one and none for more than one, then
more count for more. The contrary view is what Derek Parfit termed innumerate
ethics.12 It follows that the life-saving of one person now cannot be more important
than life-saving of more people later. But how does life-saving of one now count if
the alternative is life-enhancing for a much greater number later? This cannot be
finally resolved now. What can now be said is that these priorities are not affected
by time or geography. Most people think that saving life has a higher priority than
improving life but this is not always true.

Conclusion

We have seen that there can be no difference in principle between the ethics of sav-
ing one life or another whether now or later, whether by prevention of death, rescue,
or treatment of disease. However, there is one important contraindication to this
obviously rational and prudential conclusion. It is the undesirability of abandoning
someone to death, illness, or injury without lifting a finger to help them.
It is inherently undesirable as well as psychologically difficult to say to someone
who could be saved and who is at immediate risk that we have decided not to help
him or her because we have committed resources elsewhere. This is particularly the

10
This is discussed by Harris (2007, chapter iv).
11
These final sections borrow from Chan and Harris (2008). See also Harris (1994, 2002, 2005).
12
Parfit (1978).
28 M. Quigley, J. Harris

case where those resources have not been necessarily allocated to other such
potential victims in circumstances where all cannot be saved but rather because the
required resources have been allocated to a public health measure expected to
reduce future risk.
In many cases the choice will be an artificial one, it being possible to make an
extra effort or find extra resources to save lives immediately at risk. A transplant
surgeon on her way to a full list at the hospital is unlikely to pass by on the other
side of the street when she sees a child drowning in a puddle even though she is
committed to an equally important alternative task not least because these are
unlikely to be real alternatives outside a philosophical discussion. Where it is not
possible literally to have ones cake and eat it the choice must be to maximise lives
saved and not to discount the future. But we might think that a decent person would
not abandon the individual in front of them and trust time to save the future
individuals some other way.

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Exploring the Philosophical Foundations
of the Human Rights Approach
to International Public Health Ethics

Kristen Hessler

Abstract This chapter has four main points. First, I argue that the human rights
approach to public health ethics, championed by Jonathan Mann and others, needs
to engage with philosophical accounts of moral human rights. Second, I argue that,
while both interest-based and agency accounts of moral human rights are defensible
as philosophical accounts of human rights, and both have advantages as the foundation
for a human rights approach to public health ethics, the interest-based approach is
a natural fit for this approach. Third, I illustrate how engagement with the philo-
sophical accounts of the structure of moral rights can help respond to the criticism
that certain rights underpinning the human rights approach to public health ethics,
such as the right to health, cannot be justified. Finally, I argue that the human rights
approach to public health ethics promises to contribute to our understanding of both
health and human rights.

Keywords Human rights, Jonathan Mann, right to health, utilitarianism, well-being,

agency

Introduction

The human rights approach to public health uses human rights as an ethical
background for public health, drawing attention to the many ways in which health
depends upon social justice, and vice versa. Currently, defenders of this approach
shy away from engagement with the philosophical foundations of human rights. In
this chapter, I argue that this is a mistake. First, I explain why the human rights
approach to public health ethics needs to engage with philosophical accounts of
moral human rights. Second, I argue that, while both interest-based and agency
accounts of moral human rights are defensible as philosophical accounts of human
rights, and both have advantages as the foundation for a human rights approach to
public health ethics, the interest-based approach is a natural fit for this approach.
Third, I illustrate how engagement with the philosophical accounts of the structure

M. Boylan (ed.) International Public Health Policy and Ethics, 31

Springer Science + Business Media B.V. 2008
32 K. Hessler

of moral rights can help address the criticism that certain rights underpinning the
human rights approach to public health ethics, such as the right to health, cannot be
justified. Finally, I argue that the human rights approach to public health ethics
promises to contribute to our understanding of both health and human rights.

The Human Rights Approach to Public Health Ethics

Traditionally, utilitarianism has been considered the most natural ethical theory for
public health ethics. This view is the product of the view of public health as concerned
with the health of populations, not individuals, and the concomitant view that a
concern with population health requires utilitarian reasoning.1 By now, however,
public health ethics has for the most part shed the simplistic conviction that public
health measures necessarily conflict with individual rights. This view has been
challenged in several respects. Several theorists have argued that, as Matthew
Wynia put it, public health is, frankly, much more consequentialist in theory than
it is in reality (Wynia 2005, 6). Part of Wynias point is to suggest that both public
health ethics and traditional bioethics, which emphasizes patient autonomy, are
committed to a similar balancing between rights and utility, in which social goods
like public health limit the extent to which individual practitioners may protect
individual autonomy. According to Lawrence Gostin, for example:
[P]ublic health does not simply aggregate benefits and burdens, choosing the policy that
produces the most good and the least harm. Rather, the overwhelming majority of public
health interventions are intended to benefit the whole population, without knowingly harming
any individuals or groups. (Gostin 2001, 125)

However, this suggestion does not dispute the notion that public health is essentially
about utility maximization; rather, the point is that ethical public health respects
rights as side-constraints or limits on utility maximization. Such a characterization
preserves the essential conflict between utilitarianism and rights, asserting that
rights often win in public health ethics.
Another, more profound, challenge to the simplistic view stems from the work
of Jonathan Mann and others who have argued for what Mann called the underlying
complementarity of public health and human rights. According to Mann, the
human rights framework provides a more useful approach for analyzing and
responding to modern public health challenges than any framework thus far available
within the biomedical tradition (Mann 1996, 924). Manns central point was that
if public health is truly about improving the health of populations, then it must be
concerned not only with proximal causes of ill-health, but with the full range of
social determinants of health. For example, Mann noted that in the AIDS pandemic,
discrimination (and other human rights issues) were found not only to be tragic
results of the pandemic but to be root societal causes of vulnerability to HIV
(Mann 1996, 925). While violations of human rights correlate with poor public
healthsuch that those whose human rights are compromised generally have poor
healthefforts to promote public health that also respect human rights have been
Exploring the Philosophical Foundations of the Human Rights 33

shown in many cases to be more effective than policies that egregiously compromise
human rights. According to Mann, [W]hen people found to be infected were
deprived of employment, education, or ability to marry and travel, participation in
prevention programs diminished (Mann 1997, 10).
The human rights approach to public health ethics has been criticized on a
number of grounds. According to Mark Rothstein, this approach is self-defeating,
because in annexing human rights into the public health domain, public health
would be taking on social problems it is not prepared to address (Rothstein 2002, 45).
Lawrence Gostin mentions three reasons why the human rights approach to public
health ethics has been seen as counterproductive: first, such a broad understanding
of public health would deprive it of its focus; second, a broad understanding of public
health deprives it of its discrete expertise; and third, by espousing controversial
issues of economic redistribution and social restructuring, public health would
become highly political (Gostin 2001, 123).
Responding to these criticisms requires, I believe, two things. First, defenders of
the human rights approach to public health ethics must continue to refine and
articulate that approach. Surely public health should not annex human rights into
the public health domain, if that means that public health should become, or
replace, the human rights activism of organizations like Amnesty International or
Human Rights Watch. While much work has been done to articulate exactly how
human rights and public health are interdependent, and how public health as a field
should respond to this interdependence, continuing to articulate exactly what is
entailed by the human rights approach to public health ethics is essential for
responding to criticisms like these.
Second, those defending the human rights approach to public health ethics
should be willing to engage with the philosophical foundations of human rights.
Just as an adequate ethics for public health cannot get off the ground if it relies upon
traditional misconceptions about public healthsuch as that it is relentlessly utility
maximizingthe human rights approach cannot succeed without being willing to
rely upon the philosophical foundations of human rights. As currently developed,
the human rights approach to public health ethics does not engage with philosophical
conceptions of human rights, relying instead on human rights as constructs of
international human rights law. I argue that this is a mistake.

Human Rights: Moral and Legal

International human rights law provides an attractive starting point for those
wishing to defend a human rights approach to public health ethics. The Universal
Declaration of Human Rights (UDHR) of 1948 is the touchstone for international
human rights law; despite the fact that it was a General Assembly declaration
without binding legal force, it represents the first detailed statement by the world
community on the content of human rights. Together with the UDHR, the
International Covenant on Civil and Political Rights (ICCPR) and the International
34 K. Hessler

Covenant on Economic, Social, and Cultural Rights (ICESCR) constitute the

International Bill of Human Rights.
Many of those advocating a human rights approach to public health ethics have
tended to rely on international human rights law, especially the International Bill of
Human Rights, as defining the content of human rights. Insofar as these documents
embody something of a consensus in the international community as to the content
of human rights, this is a prudent approach. Moreover, the fact that these documents
are part of international law gives the human rights approach to public health ethics
some level of international commitment to the human rights norms as leverage, at
least rhetorically, to use in making actual progress on improving health
worldwide.
In an exchange about the legacy of Jonathan Mann, both Lawrence Gostin and
Stephen Marks (2001) seem to assume that the concept of human rights is primarily,
perhaps even essentially, a legal one, outside the purview of philosophy. For example,
Gostin refers to philosophers using human rights terminology as an example of
language and ideas borrowed across disciplines, which are often characterized
by more passion than rigor (Gostin 2001, 121). He also notes that
[W]hen ethicists adopt the language of international human rights, there is bound to be a
certain amount of confusion. For example, if an ethicist claims that health care is a human
right, does she mean that a definable and enforceable right under international law exists, or
simply that philosophical principles such as justice support this claim? (Gostin 2001, 128)

The simply in this sentence is telling, and repeated: The conceptualization of health
as a human right, and not simply a moral claim, suggests that states possess binding
obligations to respect, defend, and promote that entitlement (Gostin 2001, 128).
There are two problems with this characterization of human rights. First, the
contrast between claims of human rights that are simply (merely?) based on
philosophical principles such as justice, on one hand, and those that are binding
and enforceable legal rights, on the other, is overdrawn. It is important not to overstate
the extent to which international human rights law imposes either binding or
enforceable norms on states. One commentator describes the system for enforcing
the international Bill of Human Rights as one in which
the procedures for securing compliance with major human rights treaties hinge upon a
system that makes governments entirely responsible for reporting on themselves, once
every five years, subject to soft questioning for a few hours by a cautious committee,
elected by those very governments, and with almost no likelihood of serious censure or real
sanctions. (Leckie 2000, 130).2

Mann et al. (1994, 11) note this as well: While there are few legal sanctions to
compel states to meet their human rights obligations, states are increasingly moni-
tored for their compliance with human rights norms by other states, nongovernmental
organizations, the media and private individuals. While the publicity and shaming
mechanisms they refer to can be effective in moving states towards compliance,
such measures fall far short of the imposition of binding and enforceable legal
norms. International human rights law represents an enormous accomplishment and
a tremendously promising vehicle for improving the human rights of people around
Exploring the Philosophical Foundations of the Human Rights 35

the world, and is unquestionably one of the most hopeful and promising developments
of the 20th century. However, it remains the case that it possesses very few and
weak means for enforcing its norms. For this reason, the pragmatic appeal of basing
the human rights approach to public health ethics on legal human rights alone
should not be decisive in itself.
The more serious problem is that the UDHR and similar documents simply
assert rights without explaining or justifying them. As James Griffin notes, leaving
out philosophical justifications makes sense in legal declarations:
It is common in law not to dwell on justification; different groups, particularly different
cultures, might agree that there is such a thing as the dignity of the person, and largely
agree on the rights that follow from it, but differ in their understanding of quite what that
dignity is. So silence on the subject is often simple wisdom. (Griffin 2001, 6)

However, in seeking to make sense of international human rights law, the silence of
the law itself on matters of justification means that we have to look elsewhere for
standards by which to assess the rights claims that the law asserts. Criticisms of inter-
national human rights law as unjustifiably extravagant abound. If the human rights
approach to public health ethics relies only on a reference to international human
rights law for its claims about human rights, that approach will be vulnerable to the
same objections. (I return to this issue in section on Human Rights and Duties.)
There are two directions to choose from in replying to this criticism. One is a
positivist direction: to assert that human rights as legal rights simply are whatever
the international legal documents say they are, and as such they ought to be complied
with and enforced if necessary. The trouble for this answer is that, without an
understanding of the moral basis of legal human rights claims, it is difficult to
understand why international human rights law has the moral urgency we generally
associate with it. There is no widespread global movement demanding conformity with
other branches of international law, such as the one governing territorial waters, for
example. Moreover, when we focus on other branches of international law, such as
trade or patent law, one of the most frequently discussed questions is whether the
law as it stands is morally defensible. As these examples show, the bare fact that a
norm is part of international law does not imply that it has a privileged moral status.
Thus, grounding the human rights approach to public health ethics in international
human rights law and shunning a philosophical account of human rights sells short
the potential moral significance of this approach.
It is possible to take the positivist line and still imbue legal human rights with
moral urgency. The strongest case to be made in this vein is to defend on moral
grounds the political legitimacy of the institutions that generate international
human rights law, and then to assert that because those institutions declared the list
of human rights that they did, these rights ought to be implemented. Two points are
important here, however. First, this strategy does not avoid philosophical discussion
about the moral significance of human rights, but rather shifts the locus of philo-
sophical discussion from the justification of moral human rights to the criteria of
political legitimacy for the institutions that generate international human rights law.
Second, if we take this route, then we have no way to distinguish between the moral
36 K. Hessler

urgency of different rights declared in the International Bill of Human Rights.

Without some further means to distinguish them, then, on this approach the right to
periodic holidays with pay stands on equal footing with the right to health. Thus it
is only when we are willing to engage in the debate, necessarily philosophical,
about the deeper moral significance of rights claims that we can avail ourselves of
the moral urgency of human rights claims generally, and the special moral urgency
of some human rights claims, such as those especially relevant to health, as
compared to others.
Therefore, the advisable direction to take in responding to the request for an
account of why we care about international human rights law is to engage with the
philosophical theory of moral human rights.

Interest-Based and Agency Accounts of Human Rights

James Griffin critiques international human rights law, especially the ICCPR and
the ICESCR, for its divergence from the list of human rights justifiable on what he
calls the best philosophical account of human rights. According to Griffin, the
best philosophical account of human rights sees them as protecting human agency,
understood as the capacity to choose and pursue goals. He writes:
The first stage of agency is our taking our own decisions for ourselves, not being dominated
or controlled by someone else (autonomy). To be more than empty tokens, our decisions
must be informed; we must have basic education, access to information and to other
peoples views. And then, having formed a conception of a good life, we must be able to
pursue it. So we need enough in the way of material provisions to support ourselves. And
if we have all that, then we need others not to stop us (liberty). (Griffin 2001, 7)

For Griffin, this understanding of human rights provides a basis for critiquing the
rights asserted in international human rights law.3 For example, he takes issue with
the UDHRs assertion of a right to free movement and residence within ones country
on the grounds that ones agency is not threatened if one is not free to live precisely
where one wants to live. He also disputes the ICESCRs assertion of a right to the
highest attainable standard of physical and mental health, on grounds that such a
standard is not necessary to protect human agency. He writes, On my account, we
have a right to life, because life is a necessary condition of agency, and to the health
care necessary for our functioning effectively as agents (Griffin 2001, 25). But
asserting a right to the highest attainable standard of health is entirely unwarranted
on Griffins preferred account of human rights, because we can function meaningfully
as agents at a level of health well short of the highest attainable standard.
Griffins account depends on defending the value of agency as having the special
importance required of the justification for human rights. As he says, We value our
status as agents especially highly, often more highly even than our happiness
(Griffin 2001, 4). It also depends on an understanding of human rights as minimalist
or especially urgent moral claims, rather than more broadly as a full description
of the good life for human beings. On a minimalist view, human rights are not
Exploring the Philosophical Foundations of the Human Rights 37

coextensive with all of justice, nor all of fairness, nor all of human well-being.
Rather, they have the special urgency of a moral minimum. The strength of this
account is its parsimonythat it is supposed to rule out dubious claims of human
rights. Thus the agency account can claim the strategic benefit of grounding important
human rights in a relatively minimalist moral view, thereby resisting skepticism about
human rights and providing a powerful appeal to a wider audience.
Jonathan Mann, by contrast, saw human rights as protecting a different and
much broader good: human well-being. According to Mann: The implicit question
behind the modern human rights movement is: what are the societal (and particularly
governmental) roles and responsibilities to help promote individual and collective
well-being? (Mann 1996, 924).
In describing human rights as fundamentally concerned with human well-being,
the human rights approach to public health ethics (unintentionally) takes sides in
the debate about the best philosophical account of human rights, endorsing a version
of interest-based rights. For example, one prominent account of interest-based
rights is Joseph Razs: X has a right if and only if X can have rights, and, other
things being equal, an aspect of Xs well-being (his interest) is a sufficient reason
for holding some other person(s) to be under a duty (Raz 1986, 166). Extending
this account of rights to an account of human rights requires starting from the basic
idea that human rights accrue to individuals simply because they are human.4 For
an interest-based account of human rights, then, there must be some common
human interests that ground human rights. Adequately defending the claim that
there are universal (or nearly universal) human interests is beyond the scope of this
chapter. But at least some claims to this effect seem intuitively plausible. It seems
clear, for example, that it is universally true of human beings that a well-ordered
political community, a society that meets its members basic needs, and health are
important components of individual well-being.
Indeed, it would seem that the problem for an interest-based account of human
rights is that it permits very many rights, rather than too few. But to be fair to the
account, it does not imply that people have a human right to anything that would
make them better off. Just as Griffins agency account limits rights to only those
things necessary for agency, Razs account places limits on those interests that
ground rights. Raz writes:
Only where ones interest is a reason for another to behave in a way which protects or
promotes it, and only when this reason has the peremptory character of a duty, and, finally,
only when the duty is for conduct which makes a significant difference for the promotion
of protection of that interest does the interest give rise to a right. (Raz 1986, 183)

As Raz notes, a complete account of a right will depend on political, legal or moral
arguments (Raz 1986, 267). These points show that one cannot simply derive
human rights directly from the notion of well-being in any simple fashion. This fact
might be daunting to advocates of the human rights approach to public health ethics;
if the account of human rights does not solve the problem of what rights count as
human rights, what is the point of engaging it? Two further points are relevant.
First, the interest-based account of human rights focuses discussion on human well-
being and the duties that can be justified on the basis of that value. The fact that
38 K. Hessler

open questions on this topic need to be addressed simply indicates that we have
work to do in articulating both our moral theory of human rights and our conception
of human well-being. This is a point, it would seem, that the human rights approach
to public health ethics can embrace. The more general statement of this point is that
the adoption of a philosophical account of human rights does not answer all funda-
mental questions, but rather provides a conceptual framework within which they
can be productively asked and addressed. Second, the agency account leads leaves
similarly foundational questions open, since on that view human rights cannot be
straightforwardly derived from the notion of agency. Rather, careful thought must
be given to the valuable aspects of human agency and what kinds of social circum-
stances contribute to or hinder its development.
On an interest-based account of human rights, it is no accident that public health
and human rights are interdependent. If human well-being is the core value of
both human rights and public health, then it will not be surprising when we find that
human rights are closely correlated with public health. However, taking this
perspective requires rethinking our understandings of both public health and human
rights. Regarding the former, the World Health Organizations constitution defines
health as a state of complete physical, mental and social well-being and not merely
the absence of disease or infirmity. This is a much-quoted and often-criticized
definition, which has been pressed into service on behalf of the human rights
approach to public health ethics. Such a definition risks being attacked as impossibly
broad and ambitious. But this criticism could be turned into an asset to the human
rights approach to public health ethics, which asks us to at least consider whether,
as many of the criticisms of this definition assume, health can be neatly sliced away
from other aspects of human well-being.
Though this has been a necessarily sketchy discussion, I suggest, as a starting
point for further research, that the interest-based account of moral rights is a natural
fit for the human rights approach to public health ethics, and has the benefit of
meshing nicely with the rhetoric already used in that approach. However, the strategic
value of endorsing a minimalist account of human rights should not be underesti-
mated. The interest-based account needs to be deployed with an awareness of its
expansiveness and a readiness to justify it.

Human Rights and Duties

Onora ONeill has argued against a human rights approach to public health ethics
for a variety of reasons. Instead, she claims, if we want to establish intellectually
robust norms for health policies it would be preferable to start from a systematic
account of obligations rather than of rights (ONeill 2002, 42). One important
difference between a systematic account of public health obligations as opposed to
a systematic account of public health human rights is, as Joel Feinberg notes, that
a right specifies conduct that is morally mandatory in the older sense of actions
that are due others and can be claimed by others as their right, as opposed to a duty
Exploring the Philosophical Foundations of the Human Rights 39

understood as any action we feel we must (for whatever reason) do (Feinberg

1970, 244). Raz emphasizes the same feature of rights:
[R]ights discourse indicates a kind of ground for a requirement of action. To say that a person
ought to behave in a certain way is to assert a requirement for action without indicating its
ground. To assert that an individual has a right is to indicate a ground for a requirement for
action of a certain kind, i.e. that an aspect of his well-being is a ground for a duty on
another person. The specific role of rights in practical thinking is, therefore, the grounding
of duties in the interests of other beings. (Raz 1986, 180)

On this view, then, the feature of rights-talk that is missing from duty-talk is
the grounding of the duty in some feature of another persontheir interests or their
agency.
One reason that ONeill prefers an account of obligations is that, on such an
account, it is clearer who holds the obligations than it is when obligations are derived
from accounts of the good or of rights. The need for an internally coherent allocation
of obligations, including trans-border obligations, is more explicit, hence more
readily addressed, than it is in rights-based account of justice (ONeill 2002, 4243).
ONeill believes that if an account of obligations could be given instead of an account
of rights, this would minimize the assertions of rights that really are not rights:
[A] focus on required action, rather than on entitlements to receive, makes it easier to spot
incoherence. For example, it is easy and rather fetching (and regrettably common) to talk
about a universal right to health, but plain enough when one considers who has to do what
for whom that universal health cannot be provided, so that there can be no such right.
(ONeill 2002, 42)

Let us briefly consider this argument. ONeill assumes that a right to health entitles
one to be provided with health itself. If the content of the right, in this case universal
health, cannot be provided, then the assertion of a right to health was clearly
mistaken. But this is not the only view about how to read rights claims. Relying on
Raz once again, for example, we see that he holds that [a]ssertions of rights are
typically intermediate conclusions in arguments from ultimate values to duties
(Raz 1986, 181). One implication of this, as Raz argues, is that one may know of
the existence of a right and of the reasons for it without knowing who is bound by
duties based on it or what precisely are these duties (Raz 1986, 184). On this view,
then, statements of rights are not meant to be specifications of duties, but rather are
meant as part of a continuing discussion leading towards the assignment of particular
duties to particular agents. To quote Raz once more:
Which duties a right gives rise to depends partly on the basis of that right, on the considera-
tions justifying its existence. It also depends on the absence of conflicting considerations.
If conflicting considerations show that the basis of the would-be right is not enough to justify
subjecting anyone to any duty, then the right does not exist. But often such conflicting
considerations, while sufficient to show that some action cannot be required as a duty on
the basis of the would-be right, do not affect the case for requiring other actions as a matter
of duty. In such cases, the right exists, but it successfully grounds duties only for some of
the actions which could promote the interest on which it is based. (Raz 1986, 183)

ONeills argument concludes that there cannot be a right to health, because

universal health cannot be provided, and therefore the provision of it cannot be
40 K. Hessler

a duty on any agent. There are two senses in which universal health cannot be
provided. The first, which ONeill emphasizes, is that universal health cannot
be achieved: A demand that we be totally dedicated to others health is not
achievable; even a demand that we always give priority to health improvements
over other action is unachievable (ONeill 2002, 43). For these reasons, achieving
universal health is impossibly demanding, even if it is understood as a coherent
aim. The second sense in which universal health cannot be provided is that
health itself cannot be provided, since health is not a commodity that can be
distributed among a population.
ONeill thinks that these points suffice to defeat the claim of a right to health.
On Razs view of the relation to rights and duties, however, ONeills argument
against the right to health does not go through. Rather, while her argument shows
that we cannot have a duty literally to provide health, or a duty to achieve universal
health at the expense of all other goods, it is still open to us to argue that the right
to health grounds other important duties. Moreover, there is no reason to confine
the duties grounded in this right to states (as ONeill fears will be the result of a
rights-based approach), since different considerations can coherently and powerfully
serve to ground duties on the part of citizens of wealthy democracies, intergovern-
mental organizations, recipients of health-related aid, physicians, nurses, public
health workers, and other agents.
It is important to note that international human rights lawyers can answer
objections like ONeills on their own terms. Through a series of commentaries on
the primary treaties of international human rights law, various groups and commit-
tees under the auspices of the United Nations have worked to clarify the content
of human rights law. For example, the Committee on Economic, Social and
Cultural Rights in 2000 issued a General Comment on the right to health, which
responds to some of the concerns that ONeill mentions. For example, the
Comment states:
There are a number of aspects which cannot be addressed solely within the relationship
between States and individuals; in particular, good health cannot be ensured by a State, nor
can States provide protection against every possible cause of human ill health.
Consequently, the right to health must be understood as a right to the enjoyment of a variety
of facilities, goods, services and conditions necessary for the realization of the highest
attainable standard of health. (para. 9)

The same General Comment also recognizes that states are not the only agents who
bear duties regarding international health (para. 42). However, recall that the point
of ONeills criticism (as well as Griffins) was that there is no right to health.
Without alternative ways to read claims about moral rights, the explication provided
by the General Comments could reasonably be dismissed as embellishments on a
legal fiction. Thus, alternative ways of understanding how moral rights ground
moral duties helps provide a context to explain why the legal rights should not be
dismissed. This, then, is another reason for the defender of the human rights
approach to public health ethics to engage with the philosophical foundations of
human rights.
Exploring the Philosophical Foundations of the Human Rights 41

Conclusion

It seems clear that the human rights approach to public health ethics would turn the
main criticism of that approach, that it is counterproductive, on its head, asserting
that it is really the narrow view of public health that is counterproductive, since it
is ignoring the complex determinants of health that renders some public health
policies utterly fruitless. Gostin offers an example:
Think about HIV prevention among vulnerable women in resource-poor countries in Africa
or South America. Public health practitioners may educate them about the risks of sex and
drug use. They may even distribute the means for behavior changes (e.g., condoms and
sterile injection equipment). Yet, if women are culturally and economically dependent on,
or physically and emotionally abused by, their husbands, they remain powerless to reduce
their risk of HIV. (Gostin 2001, 126)

One reason for the futility of efforts to protect health that deal only with proximal
causes is that health, as it turns out, is a more complex good than any of us had
reason to believe. The realization that there is a correlation of health with seemingly
meaningless increases in rank in the British civil service is one indication of this
(Mann 1997). The observations of Mann, Paul Farmer, and other pioneers in delivering
public health services to the worlds poor and oppressed are others. What all these
show is that health cannot be neatly sliced away from other aspects of human well-
beingrespect for human dignity, social standing, healthy communities, and political
justice. It is for this reason that the human rights approach to public health ethics
insists that, to be effective, public health must work alongside other disciplines to
ensure the background conditions for health.
Criticizing the human rights approach to public health ethics on the grounds that
it is self-defeating, because it takes on problems public health cannot address,
seems in this light misguided, or at least far too quick. Rothstein comments that
just because war, crime, hunger, poverty, illiteracy, homelessness, and human rights
abuses interfere with the health of individuals and populations does not mean that
eliminating these conditions is part of the mission of public health (Rothstein
2002, 144). This is true enough as stated. And yet it is also true that public health
in many circumstances can ignore such issues only at the cost of what everyone
agrees to be its mission. So the best response has to be a more precise articulation
of how public health should engage with such issues. In particular, it need not take
utopian abolitionist aims as its mission, but instead devote traditional public health
methods to study the connections between these social conditions and health and
well-being more generally. Developing programs to do this will contribute enor-
mously to our understanding of health and human well-being, as well as human
rights themselves. If we understand human rights to mean legal human rights
alone, then what we can learn from public health about the complex good of human
well-being will be truncated, for on this approach to understand what human rights
are we only need to look at the documents of international law. If we understand
human rights in the moral sense, however, we need to think more deeply about the
value and functions of rights, as well as whether international human rights law
42 K. Hessler

actually got the lists of recognized legal rights correct. One great benefit of the
human rights approach to public health ethics, therefore, is that the engagement of
public health with human rights promises to deepen our understanding of human
rights: their content, the boundaries and interactions between them, and how social
circumstances contribute to or hinder their realization. This benefit can only occur
if public health does not simply adopt the lists of human rights in international law,
but rather engages with the philosophical foundations of moral human rights.

Notes

1 See Goodin (1989): Presumably it is in straightforward utilitarian terms that public health
measures of all sorts are standardly justified. We do not leave it to the discretion of customers,
however well-informed, whether or not to drink grossly polluted water, ingest grossly con-
taminated foods, or inject grossly dangerous drugs. We simply prohibit such things on grounds
of public health. That appeal is justified, in turn, most standardly by recourse to utilitarian
calculations of one sort or another. (Goodin 1989, p. 123)
2 I have argued that the softness of the treaty bodies enforcement of the international cove-
nants is not necessarily the strong objection to this system that some might make out. In order
to adopt this view, however, it is necessary to see the point of human rights law not as enforcing
binding commitments, but rather something more like initiating discussion between the inter-
national community and particular states (or within states) about the requirements of human
rights norms in those states (Hessler 2005). However, this view requires abandoning the model
of international human rights law as effectively binding and enforceable.
3 Griffin recognizes different approaches for rights in international law that are unacceptable
on his account than for ones that are merely debatable. At least some of the former, he rec-
ommends, should be given the legal cold shoulder, while at least some of the latter should
stand. I critique Griffins arguments to this effect elsewhere (Hessler 2005).
4 This is a commonly mentioned feature of human rights. See Griffin: A human right is one that
a person has, not in virtue of any special status or relation to others, but simply in virtue of being
human (Griffin 2001, 2). Also see Mann et al.: Several fundamental characteristics of modern
human rights include: they are rights of individuals; these rights inhere in individuals because they
are human; they apply to all people around the world; and they principally involve the relation-
ship between the state and the individual (Mann et al. 1994, 10).

References

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Goodin, Robert. 1989. No Smoking: The Ethical Issues. Chicago: University of Chicago Press.
Excerpted in Public Health Ethics: Theory, Policy, and Practice, eds. Ronald Bayer, Lawrence
Gostin, Bruce Jennings, and Bonnie Steinbock, 117126. New York: Oxford University
Press.
Gostin, Lawrence. 2001. Public Health, Ethics, and Human Rights: A Tribute to the Late Jonathan
Mann. Journal of Law, Medicine & Ethics 29: 121130.
Griffin, James. 2001. Discrepancies Between the Best Philosophical Account of Human Rights
and the International Law of Human Rights. Proceedings of the Aristotelian Society 101:
128.
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Hessler, Kristen. 2005. Resolving Interpretive Conflicts in International Human Rights Law.
Journal of Political Philosophy 13(1): 2952.
Leckie, Scott. 2000. The Committee on Economic, Social and Cultural Rights: Catalyst for
Change in a System Needing Reform. In The Future of UN Human Rights Treaty Monitoring,
eds. Philip Alson and James Crawford, 129144. Cambridge: Cambridge University Press.
Mann, Jonathan. 1996. Health and Human Rights. British Medical Journal 312: 924925.
Mann, Jonathan. 1997. Medicine and Public Health, Ethics and Human Rights. Hastings Center
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Mann, Jonathan, Lawrence Gostin, Sofia Gruskin, Troyen Brennan, Zita Lazzarini, Harvey
Fineberg. 1994. Health and Human Rights. Health and Human Rights 1(1): 623.
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Imperative for Public Health. Journal of Law, Medicine & Ethics 29: 131138.
ONeill, Onora. 2002. Public Health or Clinical Ethics: Thinking Beyond Borders. Ethics and
International Affairs 16(2): 3545.
Raz, Joseph. 1986. The Morality of Freedom. Oxford: Clarendon Press.
Rothstein, Mark. 2002. Rethinking the Meaning of Public Health. Journal of Law, Medicine, and
Ethics 30(2): 144149.
Wynia, Matthew. 2005. Oversimplifications II: Public Health Ethics Ignores Individual Rights.
American Journal of Bioethics 5(5): 68.
Moral Interests, Privacy, and Medical Research

Deryck Beyleveld and Shaun D. Pattinson

Abstract This chapter examines the relationship between the values of research
and privacy in the context of medical research on patient data. An analytical
framework is developed by interpreting the conception of privacy advanced in the
jurisprudence of the European Court of Human Rights by reference to the Principle
of Generic Consistency, seminally argued to be the supreme principle of morality
by Alan Gewirth. This framework is used to uncloak the inequity of positions
uncompromisingly prioritising research values over privacy values or vice versa
research worship and consent worship, respectively. We then apply this framework
to three hypothetical studies to show how apparent conflicts between research and
privacy values can be resolved.

Keywords Consent, interests, rights, research, Principle of Generic Consistency,

privacy

Introduction

Medical research on personal data involves a conflict between moral interests or

values. On the one hand, research promises moral benefits that flow from the acqui-
sition of generalisable knowledge related to human health or treatment. On the
other hand, research participants have interests in being able to control the flow and
use of private information about themselves. However, precisely how these values
relate to each other, and how conflicts between them are to be resolved, stands in
need of analysis.
To focus our discussion we will examine three hypothetical studies. The first, the
infectious disease study, involves the use the data of recipients of blood transfu-
sions for the purpose of investigating the spread of a specific infectious disease by
transfusions. The second, the cancer study, uses data from patients diagnosed with
cancer for the purpose of investigating cancer. The third, the contraceptive study,
involves the use of data from patients diagnosed with severe fertility problems and
associated conditions for the purpose of investigating future avenues for research
into chemical contraceptives.

M. Boylan (ed.) International Public Health Policy and Ethics, 45

Springer Science + Business Media B.V. 2008
46 D. Beyleveld, S.D. Pattinson

The identification and relative weight of the moral factors evoked by these studies
will differ from one moral theory to another. We will, therefore, say no more about
these hypothetical studies until we will have outlined the features of the moral theory
that we intend to apply. In the section on The PGC and its Derivation, we will out-
line our reasons for applying the Principle of Generic Consistency (PGC), which
Alan Gewirth (1978) has arguedto our minds successfullyto be the supreme
principle of morality. In the section on Research, Privacy, and Consent we will out-
line a framework for viewing the relationship between privacy and medical research
values with reference to the jurisprudence of the European Convention on Human
Rights (ECHR)that we contend is broadly in line with the requirements set by the
PGC, and its conception of privacy. We will argue that privacy and research values,
while capable of conflicting are also capable of supporting each other and that to an
important extent research values are privacy values and vice versa. Not to see this
distorts the nature of the relationship. Nevertheless, conflicts can exist between these
values and, in the section on The Hypothetical Studies Considered we analyse the
three hypothetical studies by reference to the PGC, in order to illustrate how the PGC
may be used to balance the conflicting values involved therein.

The PGC and Its Derivation

The PGC grants all agents1 rights to the generic conditions of agency, so-called generic
rights. The generic conditions of agency consist of what agents need, irrespective of
what their purposes might be, in order to be able to act at all or in order to be able to
act with general chances of success. The former category comprises basic generic
needs, termed basic goods by Gewirth. The latter category is divided into non-
subtractive and additive generic needs. Whereas lack of, or interference with, a basic
generic need precludes action altogether (or at least diminishes an agents chances of
being able to act at all), lack of a non-subtractive generic need adversely affects
the agents ability to maintain his or her capacity to act, and interference with an
additive generic good affects the agents capacity to increase its capacity to actin all
three cases, regardless of the purposes involved.
The generic conditions of agency (and consequently the generic rights) are hier-
archically ordered according to a criterion of needfulness for agency (see Gewirth
1978, ch. 2; 1996, 4546). According to this criterion, basic rights override non-
subtractive rights, which, in turn, trump additive rights in cases of conflict.2

1
Beings that take voluntary steps in pursuit of their freely chosen purposes, which they treat as
reasons for their actions.
2
Gewirth (1978, 5355) identifies, e.g. life and physical well-being (including such means to these
as health, food, clothing, and shelter) as basic needs, accurate information as a non-subtractive
need, and further information as an additive need. However, as the generic conditions of agency
figure in Gewirths argument for the PGC (as against in application of the PGC), such concrete
specification is not necessary.
Moral Interests, Privacy, and Medical Research 47

For reasons that will become clear when we present Gewirths argument, the
generic rights granted by the PGC are rights under the will or choice theory or
conception of rights. According to this conception, agents may always waive the
benefits they are granted by the rights they have (though not the generic rights
themselves, which Gewirths argument renders inalienable).
The generic rights are essentially Hohfeldian claim-rights (Hohfeld 1964). They
are also, in principle, positive as well as negative. That the rights are positive means
that agents have rights to be assisted (by those able to do so without comparable
cost to themselves) to secure/protect their having the generic conditions of agency
when they are unable to do so by their own unaided efforts. That they are negative
means that agents have rights to non-interference by other agents with their having
the generic conditions of agency. That the generic rights are claim-rights under the
will conception, however, means that duties imposed on other agents by the positive
rights are subject to the rights-holder wishing assistance, while duties imposed by
negative rights are subject to interference, being against the rights-holders will.
According to Gewirth, agents who do not accept and act according to the PGC
contradict that they are agents (i.e. he argues that the PGC is dialectically neces-
sary for any agent: Gewirth 1978, 4247). His argument has three main stages.
First, he argues that it is dialectically necessary for an agent A to accept that A
ought to defend and pursue As having the generic conditions of agency on the
grounds that A needs these conditions in order to be able to pursue the purposes A
wishes to pursue, either at all or with any general chances of success, regardless of
what these purposes might be. This ought is not a moral ought, but a categorically
(or unconditionally) instrumental one. Secondly, from this, he claims that it is dia-
lectically necessary for A to accept that all other agents B ought not to interfere
with As possession of the generic conditions against As will and ought to assist A
to pursue or defend having these conditions when A is unable to do so by As
unaided efforts if A wishes this assistance (the instrumental nature of the ought in
the premise being responsible for the will provisos). This ought is, again, not a
moral one. It is propounded by A on the basis that, because the generic conditions
are unconditionally needed by A, A unconditionally needs the generic conditions
in order to pursue/defend As having these conditions. Correlative to this, Gewirth
claims that it is dialectically necessary for A to hold that A has both a positive and
a negative prudential right to the generic conditions. Thirdly, he argues by The
Argument from the Sufficiency of Agency (see Gewirth 1978, 110) that it follows
purely logically from the dialectical necessity of As claim to have the generic
rights that A must not only claim the generic rights on pain of contradicting that A
is an agent, but must hold that A has the generic rights just because A is an agent
on pain of contradicting that A is an agent. On this basis, it follows purely logically
that A must grant that all agents have the generic rights (just because they are
agents). By virtue of this recognition the correlative ought that A must accept not
to interfere with Bs generic conditions etc. is a moral ought as only at this point
is A shown to be required to have positive regard for Bs (generic) interests.
While we consider Gewirths argument to be sound (see, in particular, Beyleveld
1991), it has not received widespread acceptance. However, there are alternative
48 D. Beyleveld, S.D. Pattinson

arguments for the PGC that, if valid, would be rationally compelling for those who
are prepared to accept certain dialectically contingent premises. These include
arguments directed at agents who accept the idea that:
1. There are morally binding requirements on action, defined as categorically bind-
ing impartial ones (i.e. categorically binding requirements that require the
agents to take equal account of the interests of all agents in determining what
they themselves may do) or
2. There are categorically binding requirements on action or
3. I (any agent) have a human right to do X or
4. Practical rationality is impartial.
The first three of these arguments have been explored in depth elsewhere (see
Beyleveld and Brownsword 2001, 7286, 9194). The argument from the third
claim is worth emphasising because of its obvious implications for legal systems that
recognise human rights. This argument proceeds on the basis that acceptance of a
right to do X requires acceptance of a right to the necessary means to do X, and
hence to the generic conditions of agency whatever X might be. Consequently, any-
one who recognises that there are human rights to do anything, must also recognise
that there are human rights to the generic conditions of agency. Hence, human rights
(to do things) must be structured in line with the generic conditions of agency.
Human rights must be thought of as having a number of features if the mere
acceptance of human rights is to require these rights to be interpreted in accordance
with the PGC. Firstly, they must be thought of as overriding all competing
considerations in case of conflict. Secondly, being human must be regarded, at least
centrally, as being an agent. Thirdly, human rights must be held to be rights under
the will conception. Fourthly, human rights must impose duties not only on the
State and its arms, but on all individuals who are capable of acting so as to affect
rights-holders abilities to enjoy the benefits of their human rights. Finally, human
rights must be considered (where agents are capable of obeying the correlative
duties) to be positive as well as negative. While we consider that a good case can
be made for holding these to be features of the European Convention of Human
Rights (ECHR) space prevents our detailing this case here (see further Beyleveld
and Brownsword 2001, 7986). However, on the assumption that we are correct
about this, interpretation of the ECHR must be in accordance with the PGC so that
the PGC can be used to assist with interpretation of the ECHR and not merely as
an external resource for ethical critique.
Finally, the fourth argument simply combines the first stage of Gewirths
dialectically necessary argument with the assumption that practical rationality is
impartial in requiring agents to take equal account of the interests of all agents,
from which acceptance of the PGC follows immediately as a requirement of
practical rationality. Should we be wrong that the ECHR jurisprudence supports the
will-conception of rights, this consideration may be used to argue that any coherent
application of human rights to agents requires the European Court of Human Rights
to adopt the will-conception.
Moral Interests, Privacy, and Medical Research 49

Research, Privacy, and Consent

Any discussion of the right to privacy needs to specify what this right covers. For
our purposes, the right to privacy will be identified as the right that is granted by
Article 8 of the ECHR. Consequently, our first concern is whether the protections
granted under this Article are in line with the PGC (or, alternatively, what interpre-
tation of Article 8 must be given to render it consistent with the PGCs requirements).
What then is the right to privacy under the ECHR?

The Concept of Privacy in the ECHR

For some time the UK courts have supported a narrow conception of the right to
privacy. This is exemplified in the Source Informatics case,3 which concerned the use
of non-identifying (i.e. anonymised) patient data. In addition to dealing with the
matter before them on the law of confidentiality, the Court of Appeal of England and
Wales made a number of obiter comments (i.e. non-binding asides) about Directive
95/46/EC (the European Unions Data Protection Directive), which aims in its
Article 1(1) to protect fundamental rights and freedoms, in particular privacy, in the
processing of personal data. In particular, the Court claimed that anonymisation of
data needs to be brought to the attention of patients only if it would be contrary to
their interests in relation to treatment they are receiving (where, e.g. it would prevent
them being informed of a diagnosis of a serious treatable condition). In giving this
opinion, the Court adopted a narrow conception of privacy, according to which,
except in circumstances covered by the example just given, the only privacy interests
that patients have in use made of their data is in concealment of their identities.
However, such a conception of privacy is inconsistent with the broader
conception utilised in the jurisprudence of the ECHR (as well as with the decision
of the House of Lords in Campbell,4 in which their Lordships considered the matter
of disclosure by the Mirror Newspaper Group of pictures taken of the supermodel
Naomi Campbell leaving a drug addiction clinic). According to Jacques Velu
(1973, 92), the right to respect for private life under Article 8(1) of the European
Convention on Human Rights protects the individual against:
1. Attacks on his physical or mental integrity or his moral or intellectual freedom
2. Attacks on his honour and reputation and similar torts
3. The use of his name, identity or likeness
4. Being spied upon, watched, or harassed
5. The disclosure of information protected by the duty of professional secrecy.

3
R v Department of Health ex p. Source Informatics [2001] Q.B. 424, reversing [1999] 4 All
ER 185.
4
Campbell v. MGN [2004] UKHL 22.
50 D. Beyleveld, S.D. Pattinson

More specifically, according to the Commission of the Council of Europe, while

[F]or numerous Anglo-Saxon and French authors the right to respect for private life is
the right to live as far as one wishes, protected from publicity the right to respect for
private life does not end there [but includes also the right to] the development and fulfil-
ment of ones own personality. (Application No. 6825/74 DR5, 87)

This was recognised in the Campbell case, with Lord Nicholls declaring that the
right is wider than protection of private information ([2004] UKHL 22, para 15)
and Lord Hoffmann holding that the right is an aspect of human autonomy and
dignity (para 50) in accordance with which Lord Hope declared that breaches are
to be measured by what is offensive in the eyes of the individual rights-holder not
in the eyes of the reasonable person (para 99).
So wide, indeed, is the right recognised under Article 8 that it has become com-
monplace to say that Article 8(1) covers all rights that the European Court of
Human Rights is prepared to recognise that are not expressly provided for in the
other articles of the Convention (see Loucaides 1990, 196).
Is such a broad conception of privacy consistent with the PGC? Since privacy
is just a label for a cluster of rights, the answer depends on what rights the European
Court of Human Rights is prepared to recognise. Quite simply, under the PGC a
right is to be granted to any generic condition of action. Undoubtedly there are
generic conditions of action that do not find expression in the other rights of
the ECHR. Similarly it is not to be doubted that the activities listed earlier by Velu
are capable of affecting the generic conditions of agency at one or other level.
Indeed, at this level, the PGC can assist the Court. This is because the Court surely
needs a rationale for identifying the rights captured by Article 8 beyond those
expressly recognised in the other articles of the ECHR, and the PGC, in conceptu-
alising a fundamental right and freedom as a generic one, does the job.
There is at least one other feature of ECHR jurisprudence that we need to con-
sider. This is that under the jurisprudence of the European Court of Human Rights,
any use of sensitive personal data without the explicit consent of the individual
concerned engages Article 8(1),5 which means that the use will constitute a viola-
tion of Article 8 unless it is justified under Article 8(2), according to which
There shall be no interference by a public authority with the exercise of this right except
such as is in accordance with the law and is necessary in a democratic society in the inter-
ests of national security, public safety or the economic well-being of the country, for the
prevention of disorder or crime, for the protection of health or morals, or for the protection
of the rights and freedoms of others.

In principle, the idea that explicit consent is required accords fully with the idea that
the generic rights are rights under the will-conception. Under this conception free
and informed consent to an activity that impinges on the individuals right will
negate any wrong done; but, without such consent a wrong will be done to the indi-
vidual unless it can be justified as required to defend the more important conflicting

5
See, e.g., Z v Finland (1998) 25 E.H.R.R. 371; and M.S. v Sweden (1999) 28 E.H.R.R. 313.
Moral Interests, Privacy, and Medical Research 51

rights of others. However, it does follow from this that exempting conditions men-
tioned under Article 8(2) must all be conceived of as serving generic rights of
others. This is because only generic rights can override generic rights under the
PGC (and then only in a distributive, not an aggregative way). However, there is no
conflict here with the jurisprudence of the ECHR, for a fundamental right and free-
dom can only be overridden by a conflicting fundamental right and freedom.6
Consequently, things like public safety and economic well-being must, under
ECHR jurisprudence, be viewed as things that, in a standing way, are necessary to
protect fundamental rights, and the explicit reference to the rights and freedoms of
others in Article 8(2) must be viewed as to rights and freedoms not implicated in a
standing way. Consistency with the PGC then requires that protection of public
safety etc. must involve protection of generic rights of others in a standing way.
This is surely the case. Unsafe public conditions, economic collapse, public disor-
der and crime, disease, and immorality are all things with negative effects in a
generic way.

The Relationship Between Privacy and Medical Research

Values: A Framework

Some medical researchers consider privacy and recognition of the rights of the par-
ticipant to be a hindrance to the much more important concerns of medical research.
Consider, for example, the rhetoric of epidemiological researchers, at least as
reported by the press, to the effect that the UK Data Protection Act 1998 and the
UK law on confidentiality are killing patients, and should, therefore be rendered
inapplicable to medical research.7
Such research worship assumes that research is indubitably of overriding value.
However, some research objectives are trivial or even ignoble and the likelihood
that research projects will successfully achieve their objectives can be speculative
or even fanciful. The historical abuses associated with Nazi Germany are in no way
representative, but it should not be forgotten that the resolution of uncertainty is the
driving force of research and even the best-designed projects hold few guarantees.
Those inclined towards research worship are prone to point to the practical dif-
ficulties raised by obtaining consent as a reason for dispensing with consent alto-
gether. Obtaining consent can, in particular, have a negative impact on the
practicality or usefulness of conducting the research. The usefulness of the research
will, for example, be severely impeded where the sample is reduced to one that is
unrepresentative or statistically below optimal. Such dangers must, however, be

6
This follows directly from the idea that human rights in instruments like the ECHR that have their
roots in the American Declaration of Independence of 1776 and in the French Declaration of the
Rights of Man and the Citizen of 1789 are conceived of as by nature inherent, universal and
inalienable (Davidson 1993, 5).
7
See, for example, the so-called Peto campaign (reported on in, e.g. Dix 2000).
52 D. Beyleveld, S.D. Pattinson

kept in their proper place. The potential effects of requesting consent and comply-
ing with refusals do not render research projects statistically insufficient or unrep-
resentative merely because the sample will be below 100%. Research into
conditions that are not isolated to a small, easily identifiable group or geographical
cluster will inevitably involve an incomplete sample of those with the condition
because of international borders and other practical restrictions. Moreover, the non-
aggregative nature of the PGC means that practical difficulties in obtaining consent
from a large number cannot justify dispensing with the need for consent where to
do so will seriously endanger even a single hierarchically more important right of
one of the participants. Thus, contrary to the research worship position, practical
difficulties in distinguishing those from whom consent is required from those from
whom it is not will sometimes justify a more stringent consent mechanism than
would be required to protect the rights of the majority of participants.
There are also those who take a position diametrically opposed to research wor-
ship and consider the consent of the research participant to be sacrosanct and never
capable of being overridden by anything. Such consent worship is equally inimical
to the proper application of the PGC. Obtaining consent is supererogatory and
sometimes even contrary to the PGC where no relevant right is otherwise infringed
(i.e. there is no threat of generic harm to an agent) or where the relevant right is
validly overridden by a more important (negative or positive) right. This is because
there is no right to consent as such under the PGC. The requirement for consent is
essentially a function of the will-conception of rights supported by the PGC. Hence
ignoring consent only engages a right when the activity requiring consent impinges
negatively on the generic conditions of agency (i.e. it constitutes a generic harm).
Consent worship is a danger suggested by paragraph 5 of the 2000 version of the
World Medical Associations Helsinki Declaration, which proclaims that the well-
being of the human subject should take precedence over the interests of science and
society,8 and perhaps even more so by the 1996 version, which states that the
interests of the subject must always prevail over the interests of science and society
(our emphasis). Read literally, these provisions elevate the interests of potential
participants over all other interests, irrespective of their relative hierarchical impor-
tance. This reading is bolstered by the fact that the 2000 version of the Declaration
goes on to state that the participants free-given informed consent must be
obtained (para 22) and ostensibly makes only one exception, namely, research on
individuals from whom it is not possible to obtain consent (and then only if the
physical/mental condition that prevents obtaining informed consent is a necessary
characteristic of the research population) (para 26). A close reading, however,
reveals that the Helsinki Declaration does not offer wholesale support for consent
worship with regard to research on patient data, because paragraph 1 defines medi-
cal research to include research on identifiable data, rather than research on
patient data as such. Thus, the Helsinki Declaration treats consent as having
absolute value where the participant is capable of giving consent and the data

8
The text of the 2000 version is available at: http://www.wma.net/e/policy/b3.htm
Moral Interests, Privacy, and Medical Research 53

remains identifiable, but places no limitations on the research use of data rendered
non-identifiable. The result is a position that, paradoxically, seems to both over-
value and undervalue the rights of the participant.
Consent worship rides roughshod over positive rights. Subject to the own
unaided effort and comparable cost provisos, the PGC-derived duty to assist in the
achievement of appropriate research objectives implies a duty to participate in
suitably designed research projects. Where such a duty exists, to insist upon
consent is to deny the positive right underpinning the duty. In principle, an agent
has a positive duty to participate in a research trial that is properly designed for the
purpose of preventing generic harm or providing generic needs where the burden of
participation carries no realistic prospect of the same or higher generic harm.
A prima facie duty to participate will, for example, exist where the research project
is well-designed, non-interventional, and aimed at preventing basic generic harm to
others. Research on patient data is non-interventional, unlike many related medical
activities directed at protecting or advancing the generic needs of othersincluding
morally important activities such as participation in pharmaceutical trials,
vaccination programmes, and blood donation programmes. It would, nonetheless,
be a mistake to assume that non-consensual participation in data research
programmes cannot cause generic harm to participants (see below) and this will
clearly limit any positive obligations. Constraints on the enforcement of the partici-
pants positive obligations will also need to take account of those situations where
individual duty-bearers cannot be proportionately identified or distinguished from
others. It is important that any mechanism seeking to encourage or enforce positive
obligations is itself consistent with the requirements of the PGC, taking into
account the danger of abuse and misuse. In particular, procedures need to be in
place to address the fact that researchers will often have considerable self-interests
in conducting and publishing research, and, if given opportunity, commercial enti-
ties are likely to seek to profit from the moral commitments of others.
It is arguable that the tendency of research and consent worshippers to ignore
relevant considerations is a function of treating the values of research and the values
of privacy as necessarily in conflict and seeking to side with one set of values over
the other (see further Beyleveld 2006). However, once we use the shorthand of pri-
vacy to capture the participants rights to control the use of that persons data
(which is a function of the broad conception of privacy in ECHR jurisprudence),
we need to recognise that many research values, particularly those concerned with
increasing life choices and improved quality of life, are also privacy values.
Conversely, it follows that protecting the participants privacy by obtaining consent
to the use of personal data for research permits more accurate research data to be
obtained, and contributes to better cooperation from research participants, both of
which enhance or facilitate research. The latter is the case because respect for pri-
vacy facilitates public trust, which is positively necessary for research, not merely
facilitative of better quality research. Indeed, public trust is necessary for society to
be governed by the rule of law/human rights. This, in turn, is necessary for effective
democracy. So, viewed through the lens of a broad concept of privacy, a picture
emerges that while conflicts between values protected by privacy and research
54 D. Beyleveld, S.D. Pattinson

values can still arise, when they do, the conflict might better be viewed as a conflict
between different privacy values or as a conflict between different research values.
So, how are such conflicts to be adjudicated?

The Hypothetical Studies Considered

In the Introduction, we outlined three hypothetical studies: the infectious disease

study, the cancer study, and the contraceptive study. These studies involve use of data
from specific categories of patients for research. While these studies share many
features, there are evident differences in the expected benefits of the research, and
each study potentially raises different objections and counter-considerations to
participation. These differences are relevant to whether dispensing with consent is
consistent with a proper attempt to apply the PGC or amounts to research worship.

The Infectious Disease Study

The infectious disease study seeks to use the data of recipients of blood transfusions
to investigate the spread of a specific serious disease through transfusions, where
there is suggestive but inconclusive evidence of a link. This study is one for which
the results could be of immediate benefit to other patients, especially if the spread
of the disease in question is preventable. As envisaged, such a study would track
basic generic rights by seeking to protect future recipients of blood transfusions and
those potentially exposed to secondary infection or dangers caused by damage to
public confidence in blood transfusions. In contrast, with appropriate safeguards,
this study should not threaten basic harm to the data subjects. Thus, to insist on
consent for a well-designed data infectious disease study is prima facie tantamount
to consent worship. Yet, if the dangers of research worship are to be kept at bay,
procedural safeguards will be needed to ensure that the rights are properly weighed
(e.g. scrutiny procedures for individual research projects); interference with the
rights of participants is minimised (e.g. anonymisation of data, particularly where
the disease is one attracting social stigma); and the benefits of the research are
achieved without avoidable study duplication or endangerment of public confi-
dence (e.g. procedures to ensure that the research results are appropriately dissemi-
nated and participants are not deceived).

The Contraceptive Study

The contraceptive study seeks to use data from patients diagnosed with severe fer-
tility problems and associated conditions to investigate future avenues for research
into chemical contraceptives. It is thereby not designed to obtain life-saving
Moral Interests, Privacy, and Medical Research 55

information but to facilitate future research that could enhance the lifestyle options
of those wishing to use chemical contraceptives. The generic needs tracked by this
study are, therefore, less weighty (under the criterion of degrees of needfulness for
action) than those protected by attempts to prevent others suffering the effects of a
serious infectious disease or cancer. This is not to suggest that research into
chemical contraceptives lacks moral value under the PGC. On the contrary,
pregnancy can cause serious social inconvenience and can be life threatening
(though rarely in countries such as the UK and the USA), and the ability to control
fertility is at least an additive good. There are, however, already many methods of
contraception available, ranging from abstinence to barrier contraception, including
many existing forms of chemical contraception. Thus, the interests potentially
protected by this study are less significant than those protected by the infectious
disease study or many instances of the cancer study.
The contraceptive study is also likely to provoke vociferous objection from some
individuals and groups. A committed Catholic woman opposed to chemical contra-
ceptives could, for example, be expected to be conscientiously opposed to the use
of data associated with her irregular periods in such a study (see Beyleveld and
Histed 1999, 7374). If participation in the contraceptive study were to take place
without consent, such a conscientious objector would be exposed to a very real risk
of disabling anxiety or might even be placed in the invidious position of choosing
between her health and her conscience. For some these harms will be basic. The
Catholic womans rights to prevent exposure to such generic harm, by preventing
the use of her data in research into chemical contraception, are at least as potent as
the rights tracked by the study.
The study envisaged here is, therefore, one for which dispensing with consent would
be tantamount to research worship. Dispensing with consent is not required by the pos-
sibility that the contraceptive study could yield a consent bias, whereby refusals will
undermine the adequacy of the sample. Whatever the plausibility of a consent bias
refusals might be disproportionately tied to groups that attach significant social stigma
to sub-fertility or contraceptive researchwe have seen that at least some objectors will
have significant generic rights supporting non-participation.

Cancer Study

The cancer study seeks to use data from patients diagnosed with cancer to investi-
gate cancer. This is the most problematic of the three hypothetical studies under
consideration because it is the least specified. Cancer is potentially life threatening;
some forms more so than others. Yet, general opportunistic information gathering
in the name of cancer research is so far removed from the goal of preventing and
curing cancer that it cannot provide a justification for dispensing with consent
without one thereby adhering to research worship. This study has particular
resonance in the UK, where legislation has been enacted to allow the relevant
government minister to make regulations permitting the use of confidential patient
56 D. Beyleveld, S.D. Pattinson

information without consent for research and wider purposes in the National Health
Service and the first set of regulations passed under that provision were concerned
with cancer studies.
Section 60 of the Health and Social Care Act 2001 was ostensibly intended as a
temporary measure, but, some six years later, replacement provisions have yet to be
enacted. It empowers the Secretary of State to pass regulations to allow the use of
confidential patient information without consent, despite any obligation of confi-
dence (s.60(2)(c) ). The information must be used for medical purposes in the
interests of improving patient care or in the public interest, where it is not reason-
ably practicable to achieve that purpose by other means. The first set of regulations
made under this provision was the Health Service (Control of Patient Information)
Regulations 2002. These provide for the creation of databases for medical purposes
related to the diagnosis and treatment of, in effect, tumours (Reg. 2). The intention
was to allow cancer patients information to be entered on to cancer registries with-
out consent or anonymisation. Significantly, these regulations do not distinguish
between patient information relating to cancer and patient information relating to
patients with, or referred for, cancer. Read literally this would appear to allow any
research without consent using the medical information of patients who happen to
have cancer, irrespective of the weight of the respective rights. A very restricted
interpretation is required to prevent descent into research worship. The issue is not
that a cancer study could never justify dispensing with consent, but that the UK
legislation is too broadly drafted to capture only those instances where a plausible
case for doing so can be made out.
If we were to suggest a type of cancer study that might justify dispensing with
consent, a plausible candidate would be one well designed to test suggestive
evidenceperhaps obtained from smaller, consensual data studiesof a link
between a specific life-threatening cancer and a specific causal factor. Additional
procedural safeguards of the type already suggested would be needed to ensure that
the specifics of the study are adequately evaluated.

Concluding Remarks

Our analysis of the way in which the PGC can assist in the adjudication of conflicts
of interests and rights has been confined to the conflict between medical research
values and privacy. It should, however, be clear that, schematically, the analysis is
equally applicable to adjudicating conflicts between privacy and other values.
A structure for the adjudication is provided by the form of Article 8 of ECHR; this
form being that a right granted by the first part of the Article may be overridden to
the extent that this is necessary to protect more weighty rights of others (as speci-
fied by the second part of the Article). What the PGC essentially does is to provide
a means of determining what rights are more important than others in case of
conflict. This applies when the rights to be weighed against privacy are explicitly
recognised by, e.g. the ECHR. But it also applies when these rights are not explicitly
Moral Interests, Privacy, and Medical Research 57

recognised. Of course, the significance of this depends on the justification for

deploying the PGC in the first place. It is worth noting that while all the arguments
for the PGC that we mentioned are contestable, to deploy the PGC in the way in
which we have done within the ECHR requires no more to be accepted than that to
grant a right to something rationally requires a right to be granted to the necessary
means for that right to be exercised. For, as we pointed out, from this it follows that
the rights to the generic conditions of action must be granted. While, as we noted,
this does not automatically require the PGC itself to be accepted (because of special
features that the PGC itself requires of the generic rights) our analysis of
adjudication of conflicts of rights is to a large extent independent of those features.
If nothing else, this indicates the significance and usefulness of the Gewirthian
concept of a generic condition of action even if arguments for the PGC itself are
not considered to be watertight.

References

Beyleveld, D. 1991. The dialectical necessity of morality: An analysis and defense of Alan
Gewirths argument to the Principle of Generic Consistency. Chicago: Chicago University
Press.
Beyleveld, D. 2006. Conceptualising privacy in relation to medical research values. In First do no
harm: Law, ethics and healthcare, ed. S. A. M. McLean, 151163. Aldershot: Ashgate.
Beyleveld, D., and Brownsword, R. 2001. Human dignity in bioethics and biolaw. Oxford: Oxford
University Press.
Beyleveld, D., and Histed, E. 1999. Case commentary: Anonymisation is not exoneration. Medical
Law International 4:6980.
Davidson, S. 1993. Human rights. Buckingham: Open University Press.
Dix, A. 2000. Cancer experts call for action on GMCs confidentiality rules. Health Service
Journal 4.
Gewirth, A. 1978. Reason and morality. Chicago: University of Chicago Press.
Gewirth, A. 1996. The community of rights. Chicago: Chicago University Press.
Hohfeld, W. N. 1964. Fundamental legal conceptions. New Haven: Yale University Press.
Loucaides, L. G. 1990. Personality and privacy under the European Convention on Human Rights
British Yearbook of International Law LXI:175197.
Velu, J. 1973. The European Convention on Human Rights and the right to respect for private life,
the home and communications. In Privacy and human rights, ed. A. H. Robertson, 12128.
Manchester: Manchester University Press.
Torture and Public Health

Wanda Teays

Abstract In this chapter, I examine the ways in which harsh interrogation methods,
such as indefinite detention, hooding, use of vicious brutality (such as the use of
dogs), and force-feeding, function as acts of torture. Although singularly they may
only be abusive, when used together or in tandem (clustering), they cross the
line into torture.
Torture is an issue of public morality. My focus is on the role of medical professionals
who have enabled torture by standing by, keeping silent, or actively participating in the
abuse of detainees. To understand how this occurs, we need to look at the context and
the ways the language as well as the practice have an effect. For example, there is wide-
spread use of euphemisms; e.g., stress positions, sleep adjustment, takeout, and
waterboarding to create a climate of acceptance. Key medical associations such as the
American Medical Association (AMA) and the World Medical Association have
issued declarations prohibiting doctors from participating and calling for them to step
forward. However, we must go beyond whistle-blowers taking personal risks, how-
ever commendable, and, thus, put in place scaffolding to make it easier to report and
investigate suspected abuse or torture. I set out guidelines for doing so in my essay.

Keywords Doctors, torture, interrogation, prisoners, detainees, force-feeding, water-

boarding, Geneva Conventions

There were some awful scenes. It felt like you were descending
into one of the rings of hell, and sadly it was our own creation.
Sen. Richard J. Durbin (D-Ill.) on the photos from Abu Ghraib
Sometimes you have to work with the devil.
Michael Scheuer, CIA, Osama bin Laden unit, noted by Stephen Grey

Introduction

Torture is an issue of public morality. As events since 11 September 2001 demon-

strate, we are locked in a battle testing our social conscience, remorse, and moral
grip. Official reports, watchdog agencies, photographs and testimony from victims

M. Boylan (ed.) International Public Health Policy and Ethics, 59

Springer Science + Business Media B.V. 2008
60 W. Teays

and perpetrators provide sufficient evidence that abuse and torture are systemic.
The net of responsibility ranges from guards and interrogators to their peers and
supervisors, from an indifferent and misinformed public to misguided politicians,
from abusers to those who stand by and keep silent. Unfortunately, this includes
doctors, nurses, psychologists, and other medical personnel who have witnessed or
enabled torture.
The public health system cannot abdicate its duty to the victims and to the medi-
cal personnel conflicted over torture and unsure where their loyalties should lie.
Health caregivers need to keep before them the moral building blocks of non-
maleficence (do no harm), beneficence (act for the good of the patient), and
justice (strive for fairness). These are fundamental aspects of human decency.
For the victims of torture, the harms are both mental and physical. Whether we
condone it or are merely complicit, torture etches its mark on our psyches. We
should examine the worldview that treats torture as a useful tool or an inevitable
consequence of war. Unfortunately, humiliating, even abusive, practices are com-
mon in the war on terror. Just look at the takeout of suspects by the Central
Intelligence Agency (CIA):
A former member of a C.I.A. transport team has described the takeout of prisoners as a
carefully choreographed twenty-minute routine, during which a suspect was hog-tied,
stripped naked, photographed, hooded, sedated with anal suppositories, placed in diapers,
and transported by plane to a secret location. A member of the Council of Europe inquiry
spoke of the cavity searches and use of suppositories during the takeout of detainees, as
being like sodomy. It was used to absolutely strip the detainee of any dignity, he stated.
Similarly, a former C.I.A. officer said that one reason the agency photographed the prison-
ers naked because its demoralizing. (Mayer 2007)

As we will see in this chapter, there are a number of issues hereboth in terms of
practices and techniques, as well as the combination of abusive treatment that,
together if not singly, effectively becomes torture. The role played by medical
personnel is a foremost concern.
According to Article 3 of the Geneva Conventions, torture is unacceptable:
Prisoners of war are to be treated humanely, with personal dignity, and not be subject
to undue hardship. Article 2 of the 1984 UN Convention against Torture and Other
Cruel, Inhuman or Degrading Treatment or Punishment states that there are no
exceptional circumstances justifying the use of torture (ur Rashid 2004). Such
international ethical guidelines serve as a common ground for addressing global
conflict. We cast them aside at our peril.
Torture treats others as a means to an end and is an affront to human dignity.
Victims of torture confess to virtually anything to get it to stop.1 Movies and television
shows perpetuate the myth that torture is effective. However, in a public letter, eight
high-ranking members of the US Armed Forces asserted that: Information gathered
through physical torture or dehumanizing humiliation is notoriously unreliable.

1
See, e.g., Rasul v. Bush, 542 U.S. 466 (2004).
Torture and Public Health 61

It has a demoralizing effect not only on those subject to violations, but also on our
own troops. It also jeopardizes the USAs moral and practical authority to promote
democracy and human rights abroad (Brahms et al. 2004). On 10 May 2007
General David H. Petraeus echoed this sentiment:
Some may argue that we would be more effective if we sanctioned torture or other expedient
methods to obtain information from the enemy. They would be wrong. Beyond the basic fact
that such actions are illegal, the techniques in the [Army Field Manual] work effectively
and humanely in eliciting information from detainees. What sets us apart from our enemies
in this fight, however, is how we behave. In everything we do, we must observe the standards
and values that dictate that we treat noncombatants and detainees with dignity and respect.
While we are warriors, we are also all human beings. (Petraeus 2007)

In December 2007, Frank Gibney, an interrogator of Japanese prisoners in World

War II, contrasted his work with the corruption of the rule of law today. We had
the sense that we were on the side of the good guys, he seethed. People would get
decent treatment (Liptak 2007). Gibney is not the only World War II interrogator
to express concern. In World War II, they debated the morality of bugging prison-
ers cells and censoring letters. We got more information out of a German general
with a game of chess or Ping-Pong than they do today, with their torture, noted
90-year old MIT physicist, Henry Kolm, who had been assigned to play chess in
Germany with Rudolf Hess, Hitlers deputy (Dvorak 2007). Things have changed.
The congressional compromise on the treatment of detainees of September 2006
expands legal protection for CIA agents, military personnel and U.S. government
employees by prohibiting detainees from invoking the Geneva Conventions in court.2
The operating assumption is that Geneva Conventions do not cover those who are not
part of a state-sponsored military, such as al-Qaeda (Mayer 2005). Furthermore, the
guideline requiring the prompt registration of detainees is not seen as binding,
because our soldiers are lawful combatants while the terrorists-insurgents are
unlawful combatants. For Professor of Medicine, Steven Miles, such bifurcation
has been shown unwise: Before the [Abu Ghraib] photos became public, every POW
returned alive, but not afterward. [Television carried the Abu Ghraib photographs on
April 29, 2004. The first of 11 beheadings in Iraq occurred 12 days later.]
By behaving in these ways, we undermine our legitimacy as a world leader (Thieme
2006).
Torture should be viewed as a social institution, Miles asserts, not a set of tech-
niques. Torturing societies create laws and policies authorizing the practices. As a
result, moral responsibility must be broadly shared, rather than fall on the shoulders
of a few bad apples (Miles 2006, 56). We need to realize, as well, that acts of
torture harm abusers as well as victims. Perpetrators cross a threshold of malice that
erodes inhibitions against further acts of cruelty. Moral scars heal slowly, if at all.
As history shows, a society that sanctions or tolerates torture bears tremendous
moral costs. Some believe that the utilitarian concern for societys well-being

2
CNN. Deal on Detainee Treatment Quells GOP Revolt, 22 September 2006, at www.cnn.
com/2006/POLITICS/09/21/terror.bill/
62 W. Teays

overrides any prohibition against torture, as we see in ticking bomb scenarios.

Time is running out and disaster will ensue if we do not resort to torture. This argu-
ment has acted as a trump card: Surely we would sacrifice a suspected terrorist to
save innocent civilians. That the argument is flawed does not negate its power.
Most acts of torture are not in response to an imminent attack. And subjecting
detainees to abusive interrogation practices rests on a presumption of terrorism,
since no charges have been placed. But it seems that detainees have at best a tan-
gential relationship to a terrorist cell or organization. According to Mark Denbeaux
and Joshua Denbeaux, government data indicates that 8% of detainees are fighters
for, 30% members of, and 60% merely associated with a group or groups
deemed terrorist organizations.3 Detainee lawyer P. Sabin Willett estimates only 8%
of the Guantnamo detainees are al-Qaeda, leaving 92% who are not (Willett 2006).
And labeling an enemy combatant rests on such evidence as the possession of
rifles, use of a guest house, possession of Casio watches, and wearing of olive drab
clothing.4 Critics question the lax standards here.
Once torture is an option in the extreme case (e.g., the ticking bomb), it is hard to
draw lines when the stakes are lower. We certainly have no Institutional Review
Board (IRB) for adjudicating tortureand the slippery slope has become evident as
the war on terror grinds along. Brigadier General Janis Karpinski testified to Major
General Geoffrey Miller advising her that: You have to have full control. You
have to treat these detainees like dogs. If you treat them any differently youve lost
control of the situation (Miles 2006, 48). The Congressional compromise of
September 2006 reins in the military but not the CIA. In January 2007, the Pentagon
set rules for detainee trials that would allow terrorism suspects to be convicted and
perhaps executed using hearsay evidence and some coerced testimony (Flaherty 2007).
Some think ratcheting up the torture will get the job done. In an interview
with news anchor Wolf Blitzer, Law professor Alan Dershowitz observed that: a
sterilized needle underneath the nail, would violate the Geneva Accords, but you
know, countries all over the world violate the Geneva Accord. (Dershowitz 2003).

3
Mark Denbaux and Joshua Denbeaux, Report on Guantnamo Detainees: A Profile of 517
Detainees Through Analysis of Department of Defense Data, Seton Hall Law Center For Policy
And Research at www.law.shu.edu/aaafinal.pdf. Note also that large sums of money (bounty) were
offered for the capture of persons identified as enemy combatants in Afghanistan and Pakistan.
One flyer states: Get wealth and power beyond your dreams. You can receive millions of dol-
lars helping the anti-Taliban forces catch al-Qaida and Taliban murders. This is enough money to
take care of your family, your village, your tribe for the rest of your life. (See Josh White and
Robin Wright, Detainee Cleared for Release Is in Limbo at Guantnamo, Washington Post,
15 December 2005.
4
Mark Denbeaux and Joshua Denbeaux, Report on Guantnamo Detainees: A Profile of 517
Detainees Through Analysis of Department of Defense Data, Seton Hall Law Center For Policy
And Research, www.law.shu.edu/aaafinal.pdf, p. 17. They state that evidence against 39% of the
detainees at Guantnamo rests on the possession of a Kalashnikov rifle, even though Kalashnikov
culture permeates both Afghanistan and Pakistanand Afghanistan is the worlds center for unac-
counted weapons. There are at least ten million small arms in the country (p. 19).
Torture and Public Health 63

He calls himself a realisttorture happensthus, we should deal with it more

openly. Consequently, we need more transparency and accountability, as with the
approval of a judge.
Certainly, history shows that a myriad of methods have been usedall with the
view that torture works. Evidence suggest otherwise. Some people willingly die for
a cause. We must never underestimate ideological crusades or personal vendettas.
Surely suicide (martyr) bombers make that apparent. To think torture leads to an
outpouring of the truth, however comforting, is no certainty.
We need to examine the acceptability of torture. We need also to look at the
moral hurdles facing the public health system and try to formulate some guidelines
for medical caregivers and the institutions of which they are a part. As I will set out,
there needs to be scaffolding in place to provide channels and support for public
health officials and personnel who do not want to enable abusive practices that border
or cross the line of torture.

Part One: Moral Quandaries Facing Caregivers

Doctors and other medical personnel face moral quandaries around the abuse and
torture of detainees and prisoners. As seen in a May 2006 report, the Pentagon
did not initially release its updated Army Field Manual on interrogation. This was
due to congressional opposition to such provisions as one allowing tougher tech-
niques for unlawful combatants (detainees) than for traditional prisoners of war
(Barnes 2006).
This issue is compounded by black sites; usually in other countries where
suspects are taken under a process called extraordinary rendition. CIA interroga-
tors in the overseas sites are permitted to use the CIAs approved Enhanced
Interrogation Techniques; some of which are prohibited by the U.N. convention
and by US military law, such as simulated drowning (waterboarding; Priest
2005b). These facilities are far from the eyes of watchdog agencies like the Red
Cross. The fact that 14 detainees were moved in September 2006 from secret CIA
prisons to Guantnamo Bay5 does not mean that rendition will not continue.
Techniques such as mock executions, ferocious dogs,6 and near drowning under-
mine the very humanity of the subject. And weapons like white phosphorous (aka
shake and bake) that can burn for hours inside a human body are downright

5
See BBC News, Bush Admits to CIA Secret Prisons, 7 September 2006 at news.bbc.co.uk/2/hi/
americas/5321606.stm.
6
The military working dogs (MWDs) were unauthorized prior to 12 November 2002. At that
point a Category II technique permits the use of dog to exploit individual phobias during
interrogations. (See Finding #11B, Army Regulation 156: Final Report. Investigation into FBI
Allegations of Detainee Abuse at Guantnamo Bay, Cuba Detention Facility. Unclassified 1 April
2005.)
64 W. Teays

macabre (Shake and Bake, New York Times editorial 2005). Such practices should
concern all medical personnel.
In 1999, the AMA set forth the following guidelines:
Physicians must oppose and must not participate in torture for any reason.
Participation in torture includes, but is not limited to, providing or withholding
any services, substances, or knowledge to facilitate the practice of torture.
Physicians must not be present when torture is used or threatened.
Physicians may treat prisoners or detainees if doing so is in their best interest,
but physicians should not treat individuals to verify their health so that torture
can begin or continue (American Medical Association 1999).
World Medical Association president James Appleyard calls on physicians to report
torture: Doctors cannot turn a blind eye to what is going on. Torturers rely on the
cloak of secrecy. The ability to expose acts of torture is crucial to its prevention
(Medical News Today 2004). And yet not all doctors report abuse, as Bioethicist
M. Gregg Bloche points out:
According to press reports, military doctors and nurses who examined prisoners at Abu
Ghraib treated swollen genitals, prescribed painkillers, stitched wounds, and recorded evi-
dence of the abuses going on around them. Under international lawas well as the stand-
ards of common decencythese medical professionals had a duty to tell those in power
what they saw. Instead, too often, they returned the victims of torture to the custody of their
victimizers. Rather than putting a stop to torture, they tacitly abetted it, by patching up
victims and staying silent. (Bloche 2004)

Doctors dignify torture by falsifying records or signing death certificates misrepre-

senting the cause of death. Steven Miles cites cases where medical assistance was
denied and medical professionals failed to report injuries and deaths caused by torture
(Tinkelman 2005). He accuses the medical system of collaborating with the design
and implementation of coercive interrogations, e.g., by providing the detainees
medical histories for interrogators.
Further evidence supports Miles accusations. For example, The Guardian
reports on an Abu Ghraib detainee who died after an abusive interrogation: The
US military later issued a death certificate, citing the cause of death as cardiac
arrest of unknown etiology. The American doctor who signed the certificate did
not print his name, and his signature is illegible (Harding 2004).
Professor of Psychiatry and Social Medicine Leo Eisenberg observed of Abu
Ghraib that: Clearly doctors went along with misrepresentations to keep things
under cover (Brown 2005). For instance, a surgeon covered up the asphyxia death
of an Iraqi Major General by saying he had died of natural causes, and a medic
covered up the death of a detainee under interrogation by sticking an intravenous
catheter into the corpse (www.englishialjaseera.net 2004)7.
At times medical personnel failed to show even minimal standards of profes-
sional conduct: We heard rumors of PUCs [detainees in Iraq] dying so we were

7
US Doctors Aided Abu Ghraib Abuses. 20 August 2004. Al Jazeera, english. aljazeera.net/
English/archive/archive? ArchiveID=5917.
Torture and Public Health 65

careful. We kept it to broken arms and legs and shit. If a leg was broken you call
the PAthe physicians assistantand told him the PUC got hurt when he was
taken. He would get Motrin [a pain reliever] and maybe a sling, but no cast or medical
treatment.8 The U.S. Armys 82nd Airborne sergeant adds: Broken bones didnt
happen too often, maybe every other week. The PA would overlook it.9
Expert witness S.G. Mestrovic asserts that the doctors, nurses, and medics
turned a blind eye and a deaf ear to abuse. He sees the medical dimension as one
of the most neglected aspects of the Abu Ghraib saga (Mestrovic 2007, 111).
Others agree. The journal Lancet condemned the behavior of the doctors, saying
that they are doctors first and soldiers second (Associated Press 2004). As Bloche
asserts: The duty of doctors in such circumstances is clear. They must provide
needed treatment then do all they can to keep perpetrators from committing further
abuse (Bloche 2004). Being a whistle-blower is one such duty. Eisenberg thinks it
ironic that: Prisoner abuses were reported not by medical staff, but by an infantry
captain [Joseph Darby]. This reached Sen. John McCain, who then brought it to
light (Brown 2005).
Health professionals may, nevertheless, be stuck on the horns of a dilemma. As
citizens, they may condone brutal interrogation methods or abusive treatment as a tool
for fighting terrorism. But, as health caregivers, the emphasis shifts. The subjects are
not just detainees, they are patients. That changes everything. Political tensions
have ratcheted up the fear factor and opened the door for widespread abuse. It is cru-
cial that those representatives of our public health system steer a clear moral course.

Part Two: From Terrorism to Terror and into The Dark Side

Terror is a form of dread. Unlike fear, dread has no object and no clear endpoint
and it can lock us in a stranglehold. The war on terror is a war to loosen that grip
and, presumably, the gloves are off. Look at Zacarias Moussaoui, the only individ-
ual brought to trial for the 9/11 attacks. Though his links to the hijackers appeared
limited at best, he was sentenced to life in solitary confinement without the possi-
bility of parole (Lewis 2006).
In her ruling in Rasul v. Bush on 31 January 2005, Federal Judge Joyce Hens
Green observed that: the government cannot even articulate at this moment how it
will determine when the war on terrorism has ended (Stout 2005). Joseph Margulies,
lead counsel for Shafiq Rasul, contended that: the war on terror makes hope impos-
sible. Even today, the Administration cannot say when the war will end. In fact,
it cannot even say how it will know that the end has come (Margulies 2006, 138).

8
Human Rights Watch (2005a). Account of Sergeant A, in Firsthand Accounts of Torture of
Iraqi Detainees by the U.S. Armys 82nd Airborne Division, September 2005, at www.hrw.org. In
the Summary, the term PUC is explained. It is a replacement for POW, since the Geneva
Conventions were said not to apply since they are not prisoners.
9
Ibid.
66 W. Teays

Americans show little regard for the detainees in the war on terror. This attitude
extends beyond interrogators and guards; the indifference is widespread. The dis-
closure of extraordinary renditions, with the USA shipping suspects to countries
known to practice torture, provoked little public outcry.10 The dramatic win by
Democrats in the midterm 2006 elections was linked opposition to the Iraq War, not
the treatment of detainees. The 2008 race has been similar, perhaps because of the
mixed response of the public.
Except for Senator John McCain, the Republican presidential candidates in 2008
favored looser limits to harsh interrogation practices. Rudolph W. Giuliani con-
doned the use of every method they could think of, including waterboarding. Mitt
Romney recommended doubling the Guantnamo detention facility, presumably to
permit many more detainees (Wallsten 2007). The pre-2005 enhanced interroga-
tion techniques (before the Congress set down restrictions) seems only to bother
McCain. He contends that the USA would lose far more from torturing prisoners
than it would gain.11
Even then, McCain elicited criticism by his February 2008 vote against a con-
gressional ban on coercive techniques such as waterboarding. The bill would have
required the CIA to abide by the Armys field manual for interrogations. Although
the bill passed, it was vetoed by President Bush on 8 March 2008. He argued: The
bill Congress sent me would take away one of the most valuable tools in the war on
terrorthe CIA program to detain and question key terrorist leaders and opera-
tives (Bush 2008).
There is a reason ex-Army officer Philip Carter calls Guantnamo: the perfect
legal black hole in which to house detainees and practice the dark arts of interroga-
tion (Carter 2004)rules such as those of the Geneva Convention which the then
Attorney General Alberto Gonzales found obsolete and quaint (Barry et al.
2004). And Vice President Cheney argued for spending time in the shadows in the
intelligence world. For him: A lot of what needs to be done here will have to be
done quietly, without any discussion (Cheney 2001). With this, the old restrictions
and civilities were cast aside, as was an open discussion about what was going on.
This is the social context in which medical personnel find themselves. Of paramount
importance is their fiduciary duty to patientseven suspected terrorists. They must
not lose sight of the ethical codes and values of the public health system. When
facing abusive practices, doctors and other caregivers need to be clearly sup-
portede.g., by the armed forces, government agencies, medical associations, and
professional groups.

10
Stephen Grey claims there are three kinds of rendition: (1) those high-profile detainees taken to
black sites were they remain entirely in American (CIA) hands; (2) those held by the US mili-
tary as unlawful combatantseither shipped to Kabul (Afghanistan) or rendered to Guantnamo
Bay; and (3) those rendered to Egypt, Jordan, Morocco, Syria, Uzbekistan, and Libya. See
Stephen Grey, The Ghost Plane: The True Story of the CIA Torture Program (2006), p. 239.
11
See A Question of Torture, Washington Post editorial, 17 May 2007. See also Ken Rudin,
Republican Presidential Contenders Meet on Stage, National Public Radio at www.npr.org,
16 May 2007.
Torture and Public Health 67

Clarifying the use of language may help reach that goal. The linguistic
ambiguity falls into two categories: The subjects we refuse to consider prisoners
and the action we hesitate to call torture. The policies and regulations that inform
medical personnel rest, to a great degree, on definitions, categories, connotations, and
concepts. For example, the set of criteria characterizing adult versus child
determines who is competent to make decisions and who is not.
What we consider vital to informed consent makes all the difference in the
parameters around human experimentation. Indeed, what we consider legal factors
in as well. In November 2007, the top US law enforcement official, Attorney
General Michael Mukasey, refused to tell the Senate whether he believed water-
boarding was legal or not (CBS 2007).
Words have power. Just note the energy spent in preventing use of the term
prisoner to apply to a detaineeto ensure that the protections afforded the
former would be inapplicable to the latter. Make no mistake about the weight of the
words we use.

Part Three: Parameters of LanguageThe Subjects

Who constitutes the patients a health professional faces in a situation of abuse or

torture? Who is the subject? The term insurgents is also commonly used.
Detainee is used for those who have been caught. Al Jazeera, the leading news
source for the Arab world, uses the term captives.12 The terms enemy combatants,
illegal combatants, unlawful combatants, foreign combatants, unprivileged
enemy combatants, and (God forbid) unlawful enemy combatants are often used
for those yet to become detainees. Value-laden adjectives like enemy, illegal,
unlawful, and foreign have linguistic power.
Mario Mancuso, Special Assistant to U.S. Department of Defense Council
explained why he would not use the term prisoner of war (POW): We want to
shield civilians from these unlawful enemy combatants because, in fact, they target
civilians and we want to protect our troops (Rhem 2005, my emphasis). A great
deal follows from what terms are permitted inor out.
Fourth Circuit Judge Diana Motz observes that the Hamdi decision allows the
president to detain an enemy combatant. But what I dont understand is, she says,
How do you make that determination? When I call someone an ostrich, I look in
the dictionary for a definition. But what did the president look to in determining
whether he [Yasser Hamdi] was an enemy combatant? (Lithwick 2007). Let us
look at the descriptions.

12
See for example, Ex-Captives Push Guantnamo Film, Al-Jazeera, 14 February 2006, at english.
aljazeera.net/English/archive/archive?ArchiveId=18623. In this article, two former Guantnamo Bay
captives have joined Michael Winterbottom, a British director, to promote his semi-documentary film
about their experience, an appearance that they coupled with a call for the prisons closure (my
emphasis).
68 W. Teays

CATEGORY #1: Prisoners are people charged with a crime, awaiting trial.
Their numbers are small. Only a few high-profile examples, like the American
Taliban John Walker Lindh, remind us that there has been a prisoner or two.
However, then Secretary of Defense Donald Rumsfeld and others made it clear that
the word prisoner is a misnomer. They cannot be prisoners, since they have not
been charged with a crime! So long as we imprison someone without charging them
of an offense, the traditional rules about humane treatment set out by the Geneva
Convention must be irrelevant. But if you think about it, this is a strange war with
no prisoners of war. This leaves many who are placed in the next category.
CATEGORY #2: Detainees have neither been charged nor convicted of a crime.
They are held at detention centers under the theoretical scrutiny of the Red Cross.
Steven Miles rejected the term detainee, opting for prisoner to stress the importance
of the long-established policies around their treatment (Miles 2006, iiiiv). He
certainly has a point. However, the very term detainee is more sinister, because it
lacks any specific legal meaning. Consequently, it underscores the vulnerability of the
captives to actions deemed out of bounds in dealing with prisoners.
Confirming the power of language, the judge in the Abu Ghraib trials involving
Graner and others would not permit the use of the word victim. When Special
Agent Nora from the CID testified, he stated that his job was to locate the victims
abused at Abu Ghraib. The judge corrected him immediately. Call them detainees,
not victims (Mestrovic 2007, 133).
It is vital to understand how many detainees we are talking about. The Associated
Press reported that, as of 15 November 2005: The United States has detained more
than 83,000 foreigners in the four years of the war on terror, enough to nearly fill the
NFLs largest stadium. Roughly 14,500 detainees remain in U.S. custody, primarily
in Iraq (Shrader 2005). An April 2006 estimate for detainees in Iraq, Afghanistan,
and Guantnamo Bay was in the 15,000 range (Scarborough 2006). As of 18 February
2007, the American detention camps in Iraq alone now hold 15,500 prisoners, more
than at any time since the war begin (Moss and Mekhennet 2007).
CATEGORY #3: This category includes detainees undergoing rendition.
Rendition is a euphemism for transport to a country known to allow torture.
Those who have undergone rendition are called rendered. Rendition is supposed
to be for those likely to resist customary interrogation methods. International
law expert Scott Horton estimates 150 people have been rendered since 200l
(Mayer 2005).
According to former British ambassador to Uzbekistan, Craig Murray: A handful
have emerged from what has been labeled a secret gulag, and have given deeply
disturbing accounts of horrific mistreatment (Murray 2005). Consider the case of
Canadian citizen Maher Arar, who was sent to Syria in 2002 under extraordinary
rendition and later released:
The underground cell was tiny, about the size of a grave [that was] damp and cold,
contained very little light and was infested with rats Mr. Arars captors beat him savagely
with an electrical cable. He was allowed to bathe in cold water once a week. He lost 40
pounds while in captivity. (Herbert 2006)
Torture and Public Health 69

Such treatment brought resultsof a sort. After months in a windowless room and
regular beatings with thick electric cables, he said, he confessed to anything they
wanted just to stop the torment (Los Angeles Times editorial 2005). We see such
false confessions with the three British detainees (the Tipton Three), who said
they met with Osama bin Laden when they were actually employed in England (The
Guardian (UK) 2004).
Few things compare to rendition. You just give up. You become like an animal,
asserted ex-detainee Arar (Mayer 2005). And who could be caught in the rendition
net? Only the guilty ones? The horror story of the post-9/11 world is that any for-
eign national anywhere in the world can be plucked from the streets of anywhere,
whisked off to another country, never be heard from again and be utterly beyond
the reach of the law (Wilkinson and Drogin 2005). Journalist Bob Herbert opined
that: In terms of vile behavior, rendition stands shoulder to shoulder with contract
killing (Herbert 2006).
CATEGORY #4: The last group is ghost detainees or ghost soldiers; those
held without charge at secret detention centers around the globe, far from the acces-
sibility of the Red Cross. Some of those centers are said to be mobile: There are
very, very serious accusations that the United States is maintaining secret camps,
notably on ships, says Manfred Nowak, UN Special Rapporteur on Torture. He
thought the evidence was sufficient to merit an official inquiry (Agence France-
Presse 2005).
In 2004, General Paul J. Kern estimated that the number of CIA ghost detainees
was in the dozens, perhaps up to 100 (Priest 2004). James Risen says a CIA prison
code named Bright Light is used for those who will probably never be released
(Risen 2006, 21). The euphemism does not obscure the horror of the situation.
A 15 March 2008 report tells on the case of Majid Khan, who was held under
extraordinary rendition for three years. His lawyer found this program to be
operating criminally, shamefully, and dangerously. (Mazzetti, 2008).
Journalist Dana Priest reports that the facilitiescalled black sitesare
known to only a handful of officials in the United States and, usually, only to the
president and a few top intelligence officers in each host country (Priest 2005b).
This may change in time: An 15 August 2006 press release from Amnesty
International details their requests for records on ghost detainees under the Freedom
of Information Act.
The term ghost detainee attempts to make invisible the individual subject who
can be incarcerated for an indefinite period of time outside of the reach of peering
eyes, or digital cameras. They are dead to the outside world and to their families.
As McCain told the congressional hearing: the situation with the CIA and ghost
soldiers is beginning to look like a bad movie (Burkeman 2004). Indeed, this bad
movie may end up with a CIA-maintained secret prison system of aging terrorists,
asserts journalist Douglas Jehl. He adds: No one has a plan for what to do with
these guys (Jehl 2005).
And what of the health caregivers who attend to those ghost detainees (ghost
soldiers) inhabiting the secret prison system, those black sites? Presumably, they
are expected to act in the shadows, bound by vows of secrecy as they care for their
70 W. Teays

patients. What this must do to their sense of themselves as medical professionals

stretches comprehension. Such secrecy seems to conflict with the Patients Bill of
Rights: If you have severe pain, an injury, or sudden illness that convinces you that
your health is in serious jeopardy, you have the right to receive screening and stabili-
zation emergency services whenever and wherever needed, without prior authoriza-
tion or financial penalty (Emergency Services section, Patient Bill of Rights).

Part Four: The Parameters of Language

The next twist of language is with the word torture. Said to be excluded from torture
are mock executions, threatened electrocutions, 24-hour strobe lights, shackles, deaf-
eningly loud music, months-long solitary confinement: stress positions like forced
standing,13 the threat of live burial, and waterboarding, whereby the detainee is
strapped to a board, forcibly pushed under water wrapped in a wet towel and made to
believe he might drown.14 The euphemisms trivialize the actions; e.g., To smoke
someone is to put them in stress positions until they get muscle fatigue and pass out.
That happened every day.15 Another example is fear up harsh, which requires
instilling fear and provoking disorientation (White and Allen 2004).
American citizen Jose Padilla was held for 21 months in near solitary. His win-
dows were blacked out; there was no clock or calendar and only a steel platform to
sleep on (he had no mattress) before he had access to legal counsel (Sontag 2006).
Joseph Margulies observes that there is no upper bound on holding a detainee in
solitary confinement or being subjected to interrogations (Margulies 2006, 107).
The lack of restrictions may relate to the utter secrecythose shadows of the
intelligence world that Cheney advocates. In the name of security, there is little
transparency or accountability.
Torture expert Darius Rejali speaks of stealth torture that is accomplished leaving
few, if any, physical marks or scars (Rejali 2004).16 He says the hooded prisoner
appearing to be electrocuted in the infamous photo is in a torture pose called The

13
See, for example, R. Jeffrey Smith and Dan Eggen, Gonzales Helped Set the Course for
Detainees, Washington Post, 1 May 2005.
14
Senate Confirmation Hearings, Kennedy quoting The Washington Post. Also, Joseph Margulies
points out that prisoners may still be kept indefinitely in solitary confinement and/or subjected to
interrogations of indefinite duration. See Guantnamo and the Abuse of Presidential Power (New
York: Simon & Schuster, 2006), p. 107.
15
Account of Sergeant A, in Firsthand Accounts of Torture of Iraqi Detainees by the U.S. Armys 82nd
Airborne Division, September 2005, Human Rights Watch, 17(3G), www.hrw.org/reports/2005/us0905/
16
In the same commentary, Rejali states that: In 1956, the CIA commissioned two experts, Wolf and
Hinkle, who described the effects of forced standing. The ankles and feet swell to twice their size
within 24 hours. Moving becomes agony. Large blisters develop. The heart rate increases, and some
faint. The kidneys eventually shut down. In addition, U.S. Army Criminal Investigation Command
(CID) has released sworn statements that detail the effects on detainees forced to stand for hours on
end. See also his book, Torture and Democracy (2007) for a more extensive discussion.
Torture and Public Health 71

Vietnam. This is one evidently well known in torture circles for its painful effects, as
is forced standing, referred to by British soldiers as The Crucifixion (Rejali 2007,
298) As Rejali points out, these techniques are known in intelligence agencies world-
wide and were not dreamed up at Abu Ghraib (Rejali 2004).
Ex-British ambassador Craig Murray spoke of two cases in Uzbekistan, one of
the countries of rendition, in which prisoners had been boiled to death. Evidently
in Uzbekistan, partial boiling of a hand or an arm is quite common (Mayer 2005).
Tales from Egyptian renditions are similarly horrific. And Maher Arars case sug-
gests that Syrian renditions also leave a lot to be desired.
On 5 October 2007 President Bush insisted: This government does not torture
people (Bush 2007). Nevertheless, an FBI memo of 22 May 2004 disclosing
abuses at Guantnamo Bay refers to an Executive Order where President Bush sets
out the parameters of allowable torture. It included the use of military working dogs
(MWD), sleep deprivation (sleep adjustment),17 stress positions, isolation,18 water
abuse,19 environmental manipulation such as the use of loud music and sensory
deprivation through the use of hoods.
The cumulative effects of abusive (enhanced) interrogation techniques need to
be examined more closely. Whereas a single action may be abusive, but tolerable,
layers of abuse can act as forms of torture. Rejali refers to this as clustering
(Rejali 2007, 4). We need to recognize how often they are done in combination
not as a solitary technique of interrogation.
Consider also how interrogation is tailored for maximum effect. M. Gregg
Bloche and Jonathan H. Marks contend that: interrogators tapped clinical data to
craft interrogation strategies, thus violating patient confidentiality. Apparently,
since late 2002 psychologists and psychiatrists have been part of a strategy that
employs extreme stress, combined with behavior-shaping rewards, to extract

17
According to Finding #14 of the Army 15-6 Final Report investigating FBI allegations of abuse
at Guantnamo from 23 November 2002 to 16 January 2003: The subject of the first Special
Interrogation Plan was interrogated 1820 hours per day for 48 days, with the opportunity for a
minimum of four hours rest per day. This technique was officially permitted under 2 December
2002 SECDEF MemorandumThe use of 20-hour interrogations. Later in 2 June 2003, CDR
USSOUTHCOM formalized the definition of sleep deprivation as keeping a detainee awake for
more than 17 hours, or allowing a detainee to rest briefly and then repeatedly awakening him, not
to exceed four days in succession. The Army recommended that this policy be clarified.
18
For example, Finding #16K of the Army 15-6 Final Report stated that: Particularly troubling
is the combined impact of the 160 days of segregation from other detainees, 48 of 54 consecutive
days of 18 to 20-hour interrogations and the creative application of authorized interrogation tech-
niques. Requiring the subject of the first Special Interrogation Plan to be led around by a leash
tied to his chains, placing a thong on his head, wearing a bra, insulting his mother and sister, being
forced to stand naked in front of a female interrogator for five minutes, and using strip searches
as an interrogation technique were found to be abusive and degrading by the AR 15-6, particularly
when done in the context of the 48 days of intense and long interrogations. However, this treat-
ment did not rise to the level of prohibited inhumane treatment.
19
The very subject of the first Special Interrogation Plan noted in the above footnote was also
subjected to forced standing and he regularly had water poured on his head. However,
interrogation logs indicate that this was done as a control measure only.
72 W. Teays

actionable intelligence from resistant captives (Bloche and Marks 2005). Such
revelations prompted the American Psychological Association to issue a condem-
nation in 2006, reaffirmed 19 August 2007:
An absolute prohibition against psychologists knowingly planning, designing, and assisting
in the use of torture and any form of cruel, inhuman or degrading treatment or punishment
[and this] includes exploitation of phobias or psychopathology, the use of psychotropic drugs
or mind-altering substances used for the purpose of eliciting information. (APA 2007)

The phrase define your terms takes on new meaning in the lower circles of Hades.
If we restrict the definition of torture to include only actions that either result in
death or cause an intensity of pain comparable to organ failure and exclude any men-
tal suffering whatsoever, then the meaning of torture has shrunk to miniscule dimen-
sions. And who is talking about having a conscience these days? That term was swept
under Gregor Samsas rug right after we linked Saddam Hussein to 9/11, or earlier,
when we tolerated the abuse of John Walker Lindh, an American citizen.
For Antonin Scalia, Supreme Court Justice, it was extraordinary to assume
that the Eighth Amendment of the Constitutions ban on cruel and unusual punish-
ment also applied to so-called torture (BBC 2008). Donald Rumsfeld argued
that the harsh interrogation methods he sanctioned should be contrasted with the
actions of terrorists. He said: Does it rank up there with chopping someones head
off on television? It doesnt (Lumpkin 2004).
Putting a positive spin on torture or harsh interrogation methods, by compar-
ing it to televised beheadings, sounds like a straw man fallacy. If it is not as bad
as being beheaded, then it must not warrant our concern. By that reasoning, pulling
out fingernails, chopping off hands or boiling arms do not sound so bad. To con-
sider beheadings the benchmark for torture takes us to new levels of moral evasion.
There is a reason the Geneva Conventions do not restrict torture to actions that
leaves scars or pain associated with organ failure. And there is a reason the
American Psychological Association condemned practices used in a manner that
represents significant pain or suffering or in a manner that a reasonable person
would judge to cause lasting harm; or the threatened use of any of the above tech-
niques to the individual or to members of the individuals family (APA 2007).

Part Five: The Boundaries of Torture

There are four practices we will examine: (1) indefinite detentions; (2) use of fero-
cious violence; (3) hooding; and (4) forced feeding. Each issue raises concerns of
morality for medical personnel.

Indefinite Detentions

People are being incarcerated without facing criminal charges. They are often in
solitary confinement and at the mercy of guards and interrogators. The picture is
one of gradual dehumanization without recourseand seemingly without end. For
Torture and Public Health 73

these detainees, security detainees and ghost detainees, Kafka is our man. No more
can the protagonist, K from Kafkas novel The Trial finds his way, can detainees
navigate the labyrinthine system shaping their daily reality.
That Ks case was a sham from beginning to end resonates with the thousands
of detainees hauled off, moved from place to place, hooded, bound, often in solitary
confinement in dark, even underground, cubiclesand never charged with a crime.
As Khalid Al-Odah said in a plea that his son, imprisoned for over four years in
Guantnamo, be brought to trial: Our demand has been to charge and try them, or
to release them. Give the prisoners due process so their guilt or innocence can be
determined fairly. In a country that presumes innocence, it is categorically unjust to
imprison so many who are probably innocent to punish so few who may be guilty
(Al-Odah 2006).
Being locked up with neither recourse nor hope of release explains the suicide
attempts. Twenty-three detainees at Guantnamo Bay tried to hang themselves during
a mass protest in August 2003 (Northam 2005). Three detainees did commit suicide
at Guantnamo in 2006 and on 30 May 2007, a Saudi detainee killed himself (Reuters
2007). As one detainee attorney stated: Under these circumstances, its hardly sur-
prising that people become desperate and hopeless enough to attempt suicide.20
Christopher Girod of the American Red Cross said that when he visited
Guantnamo, the number one question the inmates asked was: Whats happening?
How long will this last? Girod believes this uncertainty has led to widespread
clinical depression. One-in-five inmates is on an antidepressant (Lewis 2003).
James Yee, former Muslim Army Chaplain at the camp, said the indefinite deten-
tions severely traumatized some inmates. He said many sang childish songs,
repeating the song over and over and spent their days lying on the floor or bed of
their cells drawing pictures with paper and crayons (Yee 2006, 139). This accords
with the view that: people generally have a much higher tolerance for physical
discomfort than they do for psychological stress (Margulies 2006, 118).
Concerns about Guantnamo Bay led the Attorney General of Britain on 10 May
2006 to call for its closure: The camp had become a symbol of injustice and its
existence was unacceptable (BBC 2006). Similarly, a 19 May 2006 United
Nations(UN) report concluded that detention of suspects without facing charges
runs counter to established human rights law and that the war on terrorism does not
constitute an armed conflict under international law.21
And let us not ignore other potential detention sitessuch as within the USA
itself. As 4th Circuit Judge Motz noted: I fear that [this court] may also have
opened the door to the indefinite detention, without access to a lawyer or the courts,
of any American citizen, even one captured on American soil, who the Executive
designates an enemy combatant, as long as the Executive asserts that the area in

20
CNN, Gitmo inmates attack guards stopping suicide attempt, 19 May 2006 at www.cnn.
com/2006/WORLD/americas/05/19/gitmo.clash.ap/index.html
21
CNN, U.N.: Gitmo Violates World Torture Ban. 19 May 2006 at www.cnn.com/2006/US/05/19/
un.torture/index.html.
74 W. Teays

which the citizen was detained was an active combat zone, and the detainee,
deprived of access to the courts and counsel, cannot dispute this fact.22

Brutality

Contrary to Major General Geoffrey D. Millers testimony under oath that dogs
were never used to intimidate prisoners at Guantnamo, FBI memos of May 2004
indicate otherwise (Washington Post editorial 2004). Indeed, Rumsfeld authorized
the use of dogs back in December 2002,23 opening the door for using the dogs to
threaten and frighten detainees.
Photographs indicate that dogs were used in Iraq and in Guantnamo as well,
and evidence points to their use in Afghanistan.24 Dogs were used to terrorize the
20th hijacker, Mohammed al-Qahtani and Australian Mamdouh Habib. Habib
was apprehended in October 2001 and released without charges in January 2005.
He spoke of threats of being sexually abused by specially trained dogs. His lawyer
did not know if it went beyond threats (Mayer 2005). This was seen as a factor in
the coerced confessions during his rendition to Egypt.
Sergeant Santos Cardona was convicted of using dogs to abuse inmates at Abu
Ghraib in 2003 and 2004. In at least one documented case, a psychologist was
present when a dog was used in an interrogation at Guantnamo.25 Fortunately, the
use of dogs came under scrutiny and standard operating procedures now expressly
prohibit the use of dogs (MWDs) in the interrogation room (my emphasis).
Vicious dogs are but one form of brutality used on detainees. FBI agents
observed detainees being subject to strangulation and having lit cigarettes placed in
their ears (American Civil Liberties Union 2004)26. Some reported electrical burns
on their extremities.27 Then there are shackles and chains that bind detainees to the

22
Dissent in Hamdi v. Rumsfeld, as noted by Dahlia Lithwick, The Third Man: The 4th Circuit
Does One More Round on Enemy Combatants, Slate.Com, 1 February 2007 at www.slate.
com/id/2158861/
23
See Rasul v. Bush, 542 U.S. 466 (2004).
24
See, for example, Physicians for Human Rights (2005), Break Them Down: Systematic Use of
Psychological Torture by US Forces at physiciansforhumanrights.org/library/report-2005-may.
html. This report notes that: Detainees held at Bagram Air Force Base and Kandahar, Afghanistan
in 2002 report being threatened with dogs.
25
See discussion in Finding #11 of the Army Report 15-6: [A] MWD was brought into the
doorway of the interrogation room and ordered by the dog handler to growl, show teeth and bark
at the detainee. In addition, a psychologist assigned to the Behavior Science Consultation Team
(BSCT) for JTF-170/JTF-GTMO witnessed the use of a MWD named Zeus during a military
interrogation during the November 2002 time period.
26
American Civil Liberties Union. 20 Dec 2004. FBI E-Mail Refers to Presidential Order
Authorizing Inhumane Interrogation Techniques. American Civil Liberties Union. Torture
Documents Released Under FOIA www.aclu.org/safefree/general/18769prs20041220.html
27
See, for example, Department of Defense (DOD) document #052172, dated 10 November 2004,
along with DOD #052167 report on a detainee arrested on 27 April 2004 who was later abused
and tortured by American forces.
Torture and Public Health 75

floor in twisted, painful positions (one descriptively called the scorpion). They
are then left for hours or days in their own urine and excrement, or submerged in
water,28 barely able to breathe.
Short shackling consists of chaining the ankles and wrists closely together to
force the detainee into a contorted and painful position.29 That these are euphemisti-
cally called stress positions does not negate their brutality. For example, the
Army Criminal Investigation Command (CID) cites the case of a detainee arrested
on 27 April 2004 and hung from a hook about a meter (about 3 feet) off the ground.
He testified that: My hands and my legs were tied behind my back together they
put a hook on my cuffs. It was tied with a rope to the ceiling and there was a
machine on the wall they use it to pull me up.30 That was at Abu Ghraibbut it
does not stop there. A Guantnamo detainee reported having to stand for five days
straight and answer questions.31 Similar techniques were reportedly used in
Afghanistan.
Medical caregivers play their part when it comes to brutality. Steven Miles
points out that: Among other things, the regulations required detainees to be
declared physically fit for interrogation and gave interrogation leaders power over
detainees medical treatment (Tinkelman 2005). An 20 October 2003 incident led
to the conviction of U.S. Army Reservist Jeremy C. Sivits for abuse at Abu Ghraib.
Sivits testified that: Detainees are piled in a pyramid and Graner and Davis jump
on them, stomp on their feet and hands, later punch them and make them strip and
masturbate. He testified that a medic was present, but did not report this up the
chain of command because Graner asked him not to, saying You did not see
shit 32 Such intimidation of medical personnel merits our concern and may be a
factor in doctors failing to report abuse and torture.
The case of Guantnamo detainee Muhammad bin Gimeshan al-Qahtani reveals
that doctors were directly involved. After a variety of harsh interrogation
techniques such as the use of dogs, al-Qahtani refused food and water. Medical
personnel treated al-Quhtani and returned him to further interrogation, as the report
demonstrates:

28
See, for example, incident of 31 July 2003 noted in the Army Criminal Investigation Command
Report of Investigation Number 0050-2004-CID369-69273, Document #: DOD053707-
DOD054242.
29
See for example, the FBI memos obtained by the ACLU. See also Carol D. Leonnig, Further
Detainee Abuse Alleged, Washington Post, 26 December 2004, Shafiq Rasul and Asif Iqbals
Open Letter to the US Senate, 13 May 2004, www.cageprisoners.com.
30
DOD Document #052167, posted on the ACLU website materials obtained through the Freedom
of Information Act.
31
Summary of FBI Interview of Detainee at Guantnamo, Document #: DOJFBI003333-
DOJFBI003335, Date of Record: 2003-03-27.
32
See Court Martial Record of Ivan L. Frederick II, SSG, Document #: DOD042400-DOD042696,
Date of Record, 2004-08-01.
76 W. Teays

Dec. 7: a medical corpsman reports that al-Qahtani is becoming seriously dehydrated, the
result of his refusal to take water regularly. He is given an IV drip, and a doctor is sum-
moned. An unprecedented 24-hour time out is called, but even as al-Qahtani is put under a
doctors care, music is played to prevent detainee from sleeping.
Nine hours later, a medical corpsman checks al-Qahtanis pulse and finds it unusu-
ally slow. An electrocardiogram10 is administered by a doctor, and after al-Qahtani is
transferred to a hospital, a CT scan is performed. A second doctor is consulted.
Al-Qahtanis heartbeat is regular but slow: 35 beats a minute. He is placed in isolation
and hooked up to a heart monitor. The next day, a radiologist is flown in from Roosevelt
Roads Naval Air Station in Puerto Rico, 600 miles away, to read the CT scan. The log
reports, No anomalies were found. The next evening, al-Qahtani is hooded, shack-
led and restrained in a litter and transported back to Camp X-Ray in an ambulance. Over
the next month, the interrogators experiment with other tactics. (Zagorin and Duffy 2005,
my emphasis)

Detainees have alleged forced injections of an unknown substancewhich has led

to speculation about interrogation methods and/or medical experimentation. The
September 2006 Congressional compromise on torture bars biological experi-
ments33 presumably because of actual or planned experiments. Bioethicist Jonathan
Moreno has criticized such human experiments at Guantnamo, saying: [H]istory
tends to be less forgiving when governments ride roughshod over those values that
are supposed to be among their most cherished (Moreno 2003).
We know there have been detainees killed by guards or interrogators. As a
Washington Post editorial notes: For now the appalling truth is that there has been
no remedy for the documented torture and killing of foreign prisoners by this
American government (Washington Post editorial 2004). The 2007 Academy-
award winning documentary Taxi to the Dark Side addresses this by interviewing
interrogators linked to the beating-death of an Afghani detainee.
Evidence is overwhelming that torture has been systemic and across all the
armed forces34 (Lobe 2004). There is the Navy SEAL photographed in May 2003
pointing a gun at the head of a bloodied prisoner; the June 2003 case of four Iraqi
juveniles forced to kneel while a Marine discharged a gun in a mock execution; and
the Iraqis classified as enemy prisoners of war (EPWs) taken by Marines to an
empty swim pool, shackled, hooded, and forced to remain in a kneeling position for
up to 24 hours awaiting interrogation (Lobe 2004). Refuting the bad apples the-
ory, Senator McCain insisted that it was not plausible that soldiers would abuse
prisoners without being instructed to do so (White and Allen 2004).
The Abu Ghraib photographs frequently combine aggression and sexualityand
sadistic pleasure on the part of smiling guards. We see this with the mock or real

33
See CNN, Deal on Detainee Treatment Quells GOP Revolt, 22 September 2006 at www.cnn.
com/2006/POLITICS/09/21/terror.bill/
34
See, for example, the collection of documents in Amnesty International, Torture in Iraq, at www.
amnesty.ie; such as October 2001, Systematic Torture of Political Prisoners in Iraq. See also,
Torture in Iraq, Human Rights Watch (2005b), New York Review of Books, 52(17), 3 November
2005.
Torture and Public Health 77

sodomy,35 forced nudity,36 forced masturbation,37 dunking or pouring water (or

urine) on heads,38 setting dogs at the legs of naked detainees,39 the use of electrical
wires and threatened electrocution (which the ironic photo of the hooded detainee
so vividly illustrates)40 and the like.
Although it violates the Geneva Conventions, forced nudity was common at Abu
Ghraib and is widely reported by government documents. There is more at stake
here than humiliating the enemy. Although the judge at the Abu Ghraib trials ruled
that the nudity thing was irrelevant, some consider it a serious concern (Mestrovic
2007, 32). According to The Fay Report of 2004, forced nudity contributed to an
escalating de-humanization of the detainees and set the stage for additional and
more severe abuses to occur (Fay 2004, 44). Thus, What started as nakedness and

35
Numerous examples can be found in the sworn testimony taken by the CID at Abu Ghraib. See
also Sworn Statements of Abu Ghraib Detainees, Washington Post, 1620 January 2004. These
include detainees being sodomized with brooms and phosphorescent light sticks.
36
For example, Hiadar Sabir Abed Miktub al-Abudi said under oath that he was stripped, hooded,
ordered to stroke his penis in front of a female soldier and then get on his hands and knees on the
floor. Then they took off their hoods and they placed three others on our backs naked they
[American guards] were laughing, taking pictures, and they were stepping on our hands with their
feet then after that they forced us to walk like dogs on our hands and knees. And we had to
bark like a dog and if we didnt do that they started to beat us on our face and chest. Al-Abudi
also reported soldiers pointing a gun to his head and threatening to kill him and being hung on the
cell door allowing the dogs to try to bite me. (Sworn Statements by Abu Ghraib Detainees,
Washington Post, 20 January 2004.)
37
For example, Nori Samir Gunda al-Yasseri said under oath that after they were detained (in Abu
Ghraib), sandbags were put over their heads, they were beaten, stripped naked and they ordered
us to hold our penises and stroke it. They started to take photographs as if it was a porn movie.
Then they started to write words on our buttocks they left us for the next two days naked
with no clothes, with no mattresses, as if we were dogs. The first night when they stripped us
naked they made us get on our hands and knees and they started to pile us on top of the other. They
started to take pictures from the front and the back. (See, Sworn Statements by Abu Ghraib
Detainees, Washington Post, 17 January 2004.)
38
See, for example, sworn statement of Abd Alwhab Youss, who relates being handcuffed to the
cell door for two hours and then taken into a closed room where more than five guards poured
cold water on me and forced me to put my head in someones urine that was already in that room.
After that they beat me with a broom and stepped on my head with their feet while it was still in
the urine. They pressed my ass with a broom and spit on it. Also a female soldier whom I dont
know the name was standing on my legs. See also the sworn statement of Mohassein Mata
al-Zayiadi, who said: After the end of the beating, they took us to our separate cells and they
opened the water in the cell and told us to lay face down in the water and we stayed like that until
the morning, in the water, naked, without clothes. Then one of the other shift gave us clothes, but
the second shift took the clothes away at night and handcuffed us to the beds. (Sworn Statements
by Abu Ghraib Detainees, Washington Post, 17 January 2004.)
39
See the Abu Ghraib files on Salon.Com at www.salon.com. The photographs of a naked detainee
with dog bites on both legs include in at least one photo the smiling face of a female American
soldier looking up at the camera.
40
For more photographic evidence, see Electrical wires, in the Abu Ghraib files at Salon.Com,
www.salon.com/news/abu_ghraib/2006/03/14/chapter_4/
78 W. Teays

humiliation carried over into sexual and physical assaults (Fay 2004, 44).
Photographs and videos make that apparent as well.
Major General Fay reports that forced nudity and sexual assaults were brought
into Iraq from Afghanistan and Guantnamo. Rapes and sodomy of detainees have
been widely reported. See also the FBI memo on the presidents authorization of
torture and the sworn statements taken by the U.S. Army CID unit.
Detainees have also been subjected to threats (both veiled/implied and direct
ones). These included death threats and threats to be sent to Guantnamo. Ameen
Saeed al-Sheikh testifies: The guard put a pistol to my head. He said, I wish I
can kill you right now. Every hour or two, soldiers came, threatening to kill
me and torture me and Im going to be in prison forever and they might transfer me
to Guantnamo Bay.41
The complicity of doctors is demonstrated in both sworn testimony and photo-
graphs. For example, Marine Corporal Charles Graner (later convicted of abuse)
asked a doctor stitching the nose of a tortured detainee to show him how this was
done. Evidently he complied and Graner took over stitching up the wound.42
Moreover, the Abu Ghraib photo archive reveals medics/doctors giving medical
treatment to tortured detainees. One of these shows a doctor standing with her foot
on the detainees arm and hand while administering a shot in the patients side.43 It
is hard to see this as medical care.
That members of Congress agreed to censor the videos of Abu Ghraib speaks
volumes. They refused to share what they found so morally repugnant in the photos
and videos. Photos released to the public showed only adult male victims of abuse;
evidently those of women and children being abused, raped, and humiliated were
thought to elicit even more outrage and repulsion by the public. Rumsfeld said they
included acts that were blatantly sadistic (Mitchell 2005). It seems likely, never-
theless, that the censored photos will eventually surface.
The historical record is, nevertheless, a work in progress. Such abuse is devoid
of morality, like the random violence of a mob spun out of control. Just look at the
photos that were made publicthe ghoulish grins of pleasure, the viciousness that
was unleashed, and the gleefulness in treating the enemy with such brutality.44

41
From Sworn Statements by Abu Ghraib Detainees, Washington Post, 16 January 2004. There
were more than threats, as seen by the deaths of detainees. Some take time to come to light. See
also Dana Priest, CIA Avoids Scrutiny of Detainee Treatment, Washington Post, 3 March 2005,
regarding the hypothermia-death of an Afghan man at the secret CIA-run prison north of Kabul.
42
See sworn statement of Shalan Said al-Sharoni who relates the beating of nude detainees stacked
on top of one another and then photographed. One who was badly beaten about the testicles and
then handcuffed to the cell door and had water poured over him was eventually treated by a doctor.
The Doctor came to stitch the nose and the Graner asked the doctor to learn how to stitch and its
true, the guard learned how to stitch. He took the needle and he sat down to finish the stitching.
(Sworn Statements by Abu Ghraib Detainees, Washington Post, 17 January 2004, at www.
washingtonpost.com/wp-srv/world/iraq/abughraib/swornstatements042104.html.).
43
See photographs in Lacerations, in The Abu Ghraib Files, Salon.Com, at www.salon.
com/news/abu_ghraib/2006/03/14/chapter_7/.
44
There are any number of websites posting photos of torture; see for example, www.salon.com,
www. harpers.org, www.cageprisoners.com, and www.washingtonpost.com.
Torture and Public Health 79

As Sergeant A of the 82nd Airborne revealed: Some days we would just get
bored so we would make them get in a pyramid. He adds: We did that for
amusement.45
The Department of Defense CID report reveals others who found abuse and tor-
ture a source of entertainment. It is hard not to label this sadistic. For example, in
Section 1A of Abu Ghraib there are tack marks on the wooden wall to indicate how
many stitches detainees have received after being abused, particularly by dog
bites.46 And let us note the grinning faces in the photos from Abu Ghraib that were
first released in 2003. Susan Sontag observes of the grinning guards:
Looking at these photographs, you ask yourself, How can someone grin at the sufferings
and humiliation of another human being? Rape and pain inflicted on the genitals are
among the most common forms of torture. Not just in Nazi concentration camps and in Abu
Ghraib when it was run by Saddam Hussein. Americans, too, have done and do them when
they are told, or made to feel, that those over whom they have absolute power deserve to
be humiliated, tormented. They do them when they are led to believe that the people they
are torturing belong to an inferior race or religion. (Sontag 2004)

The violence is sexualizedthe stuff of photographs. The fact that so many of the
victims are faceless, with heads in bags erasing their identity, makes the aggression
even more atrocious.

The Use of Hoods

Hoods function as a form of suffocation. Such sensory deprivation (blindfolds, ear

muffs, duct tape, etc.) can terrify, disorient, and breakdown even the most recalci-
trant subject. This practice is inhumane. I see it also as a form of torture.
Consider the 25 April 2006 decision of the Movie Picture Association of
America to censor the poster advertising a documentary, The Road to Guantnamo.
The poster shows a man hanging by his handcuffed wrists, with a burlap sack over
his head and a blindfold tied around the hood. The reason given for the censorship
was that the burlap bag over the guys head was depicting torture, which wasnt
appropriate for children to see, said Howard Cohen, co-president of Roadside
Attractions, distributor of the film in North America (Kennicott 2006).
At the congressional hearing over interrogation practices, Deputy Defense
Secretary Paul Wolfowitz and Marine General Peter Pace admitted that practices in
dozens of Iraqi jails violated the Geneva Convention by keeping bags over prisoners
heads for 72 hours (Sisk 2004). The FBI inquiry also details use of duct tape, as with:

45
See Human Rights Watch, Account of Sergeant A, 82nd Airborne Division, in Leadership
Failure: Firsthand Accounts of Torture of Iraqi Detainees by the U.S. Armys 82nd Airborne,
September 2005, at www.hrw.org/reports/2005/us0905/.
46
Sworn statement, CID Interview, regarding abuse at Abu Ghraib, 2 February 2004, DOD
#052851.
80 W. Teays

Investigators wrapped a detainees head in duct tape because he would not stop
quoting the Koran.47 A March 2008, Pentagon review of videotaping interrogations
did not condemn such tactics: Lieutenant General Michael D. Maples, director of the
Defense Intelligence Agency found the forcible use of duct tape to silence Qatar
detainee Ali al-Marri from chanting to be acceptable. (Mazzetti and Shane 2008).
American Taliban John Walker Lindh also got the duct-tape treatment after his
capture in fall 2001. Shot in the leg prior to his capture and badly dehydrated, Lindh
was hooded and left with an untreated wound festering for days, despite doctors
being readily available. He was repeatedly threatened with death, kept in an
enclosed, unheated and unlit metal shipping container (with holes drilled in for air)
and removed only during interrogations (Lindorff 2004). Journalist Richard Serrano
points out: An untold number of U.S. military service members took souvenir
photographs with Lindh. Aboard the ship, he was kept in irons, blindfolded and
strapped to a gurney with duct tape all of which made him stand out as a prize
captive for the U.S. (Serrano 2002). Lindh became a prized deer instead of a
defendant. (Cohen 2002).
In Being and Nothingness, Jean Paul Sartre asserts that sadism entails the objec-
tification of the other. We see this with hooding. Besides the sensory deprivation,
hoods strip away the identity, uniqueness, and subjectivity of the individual. Hoods
and isolation are destabilizing, tearing at the persons sense of place and time. No
doubt this was true for Lindhand countless others. For instance, American Jose
Padilla was detained for over three years as an enemy combatant. A December
2006 trip to the dentist for a root canal conveys the extent such sensory depriva-
tion can go: His legs were shackled, his hands manacled, and he wore noise-
blocking headphones over his ears and blacked-out goggles over his eyes. Then
the guards, whose faces were hidden behind plastic visors, marched their prisoner
down the hall to his root canal (Sontag 2006).
This is not the only time guards sought anonymity. Both detainees and the Army
Unit investigating alleged abuse mention Department of Defense (DOD)s masked
interrogators relaying veiled death threats; some relayed as dreams.48 One such
dream told to a detainee was: There are worse things than physical pain, and

47
American Civil Liberties Union, FBI Inquiry Details Abuses Reported by Agents at Guantnamo,
3 January 2007 at www.aclu.org/safefree/torture/27816prs20070103.html. This technique was
deemed unauthorized by the Army Report 15-6 (see Finding #7) and the ICE Chief received
a verbal admonishment, but did not receive any formal discipline action. The Army Report con-
cluded that he ought to have been formally admonished.
48
See Sworn Statements by Abu Ghraib Detainees, Washington Post, 1620 January 2004. See
also, Finding #22, Army Regulation 15-6: Final Report. Investigation into FBI Allegations of
Detainee Abuse at Guantnamo Bay, Cuba Detention Facility, www.defenselink.mil/news, July
2005. One relayed a dream that he saw four detainees that were chained together at the feet.
They dug a hole that was six-feet long, six-feet deep, and four-feet wide and that the dream
meant that he was never going to leave GTMO unless he started to talk. The Army deemed the
dream not at the level of a threat, but that it was a prelude to a direct threat made by the Special
Team Chief who followed the first interrogator.
Torture and Public Health 81

that the detainee will very soon disappear down a very dark hole. His very exist-
ence will become erased. His electronic files will be deleted from the computer, his
paper files will be packed up and filed away, No one will know what happened
to him and, eventually no one will care.49
Masked interrogatorsand doctorsare mentioned elsewhere. Khaled el-Masri
is a German citizen and victim of mistaken identity who was seized by the CIA as
part of extraordinary rendition. He told of an English-speaking doctor who was
masked when he was inspected on his arrival at the Dark Prison in Afghanistan,
where he was detained and tortured for five months before being released (Grey
2006, 88, my emphasis). Such incidents conjure up images of hooded executioners
or Klan members seeking to hide their identity.
The hoods may protect the guards anonymity, but they dehumanize the subjects
and become targets for the displacement of rage and racist fury. With hoods in place
and the others gaze shielded, it is easier to stand on the necks and bodies of the
detainees, stack them up like pieces of wood, yank their genitals, or put them in
humiliating positions, rape or sodomize them, pour ice water on them, threaten to
drown or electrocute them and so on. There is a reason the hooded prisoner stand-
ing on the box with electrodes attached became an icon of horror.
Darius Rejali asserts that hoods were used in Brazilian and South African
tortureinfamous for human rights violations (Rejali 2004). Reverend George
Wauchope, a torture victim under South African apartheid, argues that: The use of
a suffocating bag or hood around ones head, of dawn to dusk interrogation for days
without a break, and of physical and psychological abuse are all forms of torture
(Wauchope 2004).
That the hooding may open the door for further abuse has not been given the
attention it deserves. Some trivialize itas with Guy Womack, attorney for M.P.
reservist Charles Graner, who was convicted of a number of charges, including
assault and battery. It boggles the mind that Womack could look at the piling up of
hooded, naked detainees by laughing perpetrators and compare it to college sports.
In his opening statement at Graners trial, Womack said: Dont cheerleaders all
over America form pyramids six to eight times a year. Is that torture? (Booth
2005). And it is certainly not as bad as being beheaded! The barbaric nature of
hoods being used todayin our namesshould trouble us all. And they must cause
medical personnel to feel like they are trapped in some horror movie.

Force-Feeding

Omar Deghayes, a Libyan held at Guantnamo, explained why he went on a hunger

strike: Look, Im dying a slow death in this place as it is. I dont have any hope of
fair treatment, so what have I got to lose? He was not alone. It was September

49
Ibid. The interrogator also relayed a threat to the detainees mother.
82 W. Teays

2005 and as many as 200 prisonersmore than a third of the camprefused food
to protest conditions and prolonged confinement without trial. Military officials
acknowledged that 20 of them were kept at the camps hospital, fed through nasal
tubes, and sometimes given fluids intravenously (Lewis 2005).
Detainee lawyer David Remes argues that: Tube feeding is itself a form of tor-
ture. You have no conception of the brutality that is inflicted on these men. And
anybody who tells you otherwise from within the camp, from the military, is lying
(Pessin 2006). Force-feeding is a disgrace, says another detainee lawyer, Thomas
B. Wilner. He adds: It is clear that the government has ended the hunger strike
through the use of force and through the most brutal and inhumane types of treat-
ment (Golden 2006).
To prevent hunger strikers from vomiting, specially designed restraint chairs that
immobilize the legs, arms, shoulders and head are being used with long periods of
isolation. Some strikers quit protesting after being strapped in the chairs and feed-
ing tubes inserted and removed so violently that they bled or fainted. Some claimed
that too much food was given deliberately, causing diarrhea, resulting in detainees
defecating on themselves (Golden 2006).
Reports suggest adversarial relationships between the striking detainee-patients and
the medical staff, e.g., Abdul Rahman complained that a Navy doctor put in the feed-
ing tube and moved it up and down, causing him to throw up blood. Others say feeding
tubes were forcibly shoved into detainees noses and stomachs with no anesthesia or
sedativeand reused without being sanitized. The detainees could see the blood and
stomach bile from other detainees remaining on the tubes (Lobe 2005).
Evidently force-feeding has been standard policy at Guantnamo since early
2002 and those who resist may face harsh consequences. Journalist Adam Zagorin
cites the case of 20-year old Yusuf al-Shehri, detained since he was 16. He was
regularly strapped into a restraint chair and force-fed through a plastic tube 50%
larger than those commonly used. His medical records include a note that al-Shehri
was informed that dying is not permitted (Zagorin 2006).
The do no harm prohibition in the Hippocratic Oath seems to have slipped
under the radar. Or it was trumped by draconian policies for handling detainees.
Al Qaeda expert Saad Al-Faqih, opined: The Americans tend to deal with things
in a quantifiable manner and they do not appreciate the full strategic significance
of Islamic ideology and spirituality (Abedin 2004).
After the three suicides of hunger-striking detainees in June 2006, Rear Admiral
Harry B. Harris, Jr. made a public statement. He insisted that the suicides were not
an act of desperation, but an act of asymmetric warfare against us (White 2006).
Rumsfeld dismissed the hunger strike as a publicity stunt (Pessin 2005). In contrast,
many medical professionals deplored the situation. Over 260 doctors from seven
countries issued this call: We urge the US government to ensure that detainees are
assessed by independent physicians and that techniques such as force-feeding and
restraint chairs are abandoned.50

50
See, Doctors Demand End to Guantanamo Force-Feeding, Guardian (UK), 10 March 2006.
Torture and Public Health 83

The World Medical Association (WMA) and the AMA prohibit force-feeding
(Khamsi 2006). The WMA Declaration of Malta on hunger strikers asserts that:
Where a prisoner refuses nourishment and is considered by the doctor as capable
of forming an unimpaired and rational judgment concerning the consequences of
such voluntary refusal of nourishment, he or she shall not be fed artificially. Those
who are mentally competent normally have the right to refuse force feedingeven
if they are prisoners.
According to the Physicians for Human Rights (PHR), the USA admits that
military physicians have force-fed hunger strikers at Guantnamo. These physi-
cians may have been pressured into intervening in ways that contradict their ethical
obligations (Physicians for Human Rights 2005b). PHR called for an independent
group of physicians to investigate and verify that no health personnel are compelled
to engage in force-feedingand that the AMA should sanction those who violate
their ethical duties (Atkinson et al. 2006).
Bioethicists Michael A. Grodin and George J. Annas contend that the hunger-
striking detainees do not want to die: Their goal is not suicide but to change the
inhumane conditions of the prison. They recommend that: The United States
should focus on bringing procedures at Guantnamo into conformance with inter-
national human rights law, not on developing novel coercive techniques to break the
hunger strikes (Grodin and Annas 2006). The lawyers for striking detainees at
Guantnamo say the tube feeding is a violation of medical ethicsand the AMA
says physicians should respect the decision not to take nourishment, as long as the
person is competent and understands the potential consequences.

Conclusion

Joseph Margulies writes about the fake interrogations staged at Guantnamo for the
public (journalists and members of Congress who visited the base). He says:
According to Erik Saar, a linguist and former interpreter at Camp Delta, the mili-
tary routinely staged bogus interrogations to dupe congressional delegations
(Margulies 2006, 171). Margulies contends: Like the decision to create a bogus set
of financial records to conceal an elaborate accounting fraud, one does not stage
phony interrogations except to conceal wrongdoing (Margulies 2006, 174).
And what of medical personnel who stay silent or enable torture? Bloche is right
to tell them: turn yourselves in. Standing up against abuse must take precedent over
any allegiance to the military or to the nation. We can resolve these two loyalties by
clarifying the frame of reference of medical caregivers. If we hold the duty owed to
patients as paramount, the moral qualms about the detainees are more readily
addressed. As Steven Miles says: health professionals are accountable for the health
of their patients, regardless of the fact of imprisonment (Miles 2006, 65).
Journalist Seymour Hersh reports on a senior intelligence official who is being
asked: When do we start blowing the whistle? and When does it cross the line
from abuse of prisoners to war crimes? In the heat of it he observed, people do
strange things that in retrospect they cant explain or condone. Guys are having
84 W. Teays

pangs of conscience nowand theyre scared shitless of a future investigation.

In time somebody is going to start blowing the whistle (Hersh 2004, 53). That is
not the only worry. Such abuse is a two-way street: both victim and victimizer
suffer. A former CIA officer reportedly told Jane Mayer that:
The C.I.A. kept a doctor standing by during interrogations. He insisted that the method was
safe and effective, but said that it could cause lasting psychic damage to the interrogators.
During interrogations, the former agency official said, officers worked in teams, watching
each other behind two-way mirrors. Even with this group support When you cross over
that line of darkness, its hard to come back. You lose your soul. You can do your best to jus-
tify it, but its well outside the norm. You cant go to that dark a place without it changing
you. You are inflicting something really evil and horrible on somebody. (Mayer 2007)

An important first step is to cast a brighter light on protocols and practices tied to
the war on terror. Too much has been done in secrecy, outside the public view.
Human Rights Watch was right to urge the UN to convene an international inquiry
on the rendition of Ahmed Agiza and Muhammed al-Zerywith the aid of both
Egypt and Sweden (Hersh 2004, 55). But the full accounting they seek needs to
be opened up. We should widen the lens to get a better picture of what sorts of acts,
including torture, have been taking place. As part of that inquiry, specific attention
should be focused on the role of health caregivers. Without a clearer grasp of what
has transpired, any moral assessment may be shortsighted or incomplete.
The second step is a call to moral duty on the part of the doctors, nurses, and
other medical personnel. As noted by the World Medical Association, even though
a doctor may be in a prison: The doctors conduct must not be in conflict with
international human rights and ethical standards (World Medical Association
2003). We must pay attention to the subjects, the patients, who are owed a minimal
level of care. This includes such things as respect for human dignity, patient confi-
dentiality, and the right of informed consent.51 As one of the British detainees
released from Guantnamo put it: After awhile, we stopped asking for human
rights. We wanted animal rights (Prince and Jones 2004). Their rights as patients
should be in the foreground for the medical personnel who treat them. They should
be treated with dignity and respect.
Caregivers should not be either actively or passively complicit in any mistreatment
of the detainee-patients. This includes participating in unnecessary procedures, par-
ticularly ones intended for humiliation rather than medical needsas seen in the use
of rectal suppositories in the takeout of suspects. Moreover, we should support
those like Robert A. Fein, psychologist, head of the Intelligence Science Board, a
group advising the intelligence agencies on effective and humane ways to question
suspects. In his view: even the word interrogation is tainted by torture. He uses the
term intelligence interviewing for the skills he promotes. (Shane 2008). He is right
to distance himself from the terms now associated with torture.
A third, related, step is to examine such egregious treatment as the use of indefinite
detentions, hoods, brutality, and force-feeding. Such methods exhibit wanton

51
See guidelines and discussion, along with relevant links for medical professionals at Prison
Healthcare Professionals, www.prisonhealthcarepractitioners.com/index.shtml
Torture and Public Health 85

cruelty and disregard for human life. Though they may not result in death or pain
akin to organ failure, they function as tortureparticularly since they are often
done together or in tandem. Medical personnel must never lose sight of the
humanity of their patients. Philosopher Judith Jarvis Thomson, in another context
altogether (the abortion debate), set forth standards of moral behavior: She calls for
us not to be Good Samaritansbut to be Minimally Decent Samaritans (Thomson
1971). Surely this applies here as well.
Lastly, we must examine the scaffolding in place for doctors and other health-
care personnel to confront abuse, place charges, and bring torture to light. We need
to go beyond targeting individual wrongdoers and look at systemic change. We can
expect doctors not to participate in disrespecting or abusing patients (e.g., in con-
ducting experiments without informed consent or in enabling torture or harsh or
enhanced interrogation). However, individual caregivers are not always able to
take personal risks in opposing the mistreatment of others.
There must be a framework for whistle-blowers to raise concerns. With such
channelslegal as well as within the medical profession itselfmedical caregivers
can more easily resist coercion regarding torture. We need the culture and guidelines
for speaking out, confronting abusers, and rejecting a protocol that violates basic
human rights. We cannot just rely on individual heroes having the courage to act.
Abu Ghraib whistle-blower Sergeant Joseph Darby showed that confronting evil
was at considerable risk; e.g., he had to have bodyguards for six months. In addi-
tion, Darbys family had to live in protective custody due to death threats after he
reported the prison abuse (Darby 2006). Those who confront torture should not
have to place their lives on the line. And this is crucial for the medical personnel
who see or suspect abuse.
There should be channels in place at all levels. Health caregivers need a structure
setting out guidelines and procedures for reporting abuse. They should have access to
advocates or legal counsel if necessary. A system must be in place for reporting wrong-
doing. In that way, we honor the relationship between doctors and patients. Those
patients who are detainees, ghost detainees, prisoners; even unlawful enemy
combatantsare still human beings for whom medical caregivers owe a duty of care.
We must step back and reconsider what we are doingand who we are becoming.
We need to look at the moral risks we are taking. That process of making war on terror
may be transforming us into something without conscience, remorse, or morality. The
transformation is not yet complete, but for those who want to battle with this dark
possibilitynew methods, tactics, and deployment of forces will be required.

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Exporting the Culture of Life

Laura Purdy

Abstract The Religious Right is using every means to impose its restrictive view
of sexual and reproductive rights on everyone under the umbrella of a so-called
culture of life (CL). The CL prohibits the direct killing of innocents (but not,
apparently, letting them die), and requires that all sexual activity be open to pro-
creation, thus restricting access to abortion and contraception. All this is alleged to
be based on Gods will and to constitute the only objective morality. But there is
no epistemological basis for this claim, the strictures are inconsistent, and the rules
create unnecessary misery. Those most at risk from the sexual strictures are women,
children, and gay men. The risks are greatly magnified in Third World countries
because of poverty and lack of access to even the most basic health care. Yet the
Bush administration is doing everything in its power to impose the CL on such
countries by means of its foreign policy and aid programs.

Keywords Religious Right, foreign policy, gag rule, abortion, pro-life, religious
ethics, family planning

When the self is an idol, it naturally wants to be autonomous; a law of nature unto ones
self, not wishing to submit to anything or anyone. This is the antithesis of Christian life.
All Christians are to submit to the Lordship of Jesus Christ. And then God has defined the
lines of authority even further by requiring wives to submit to husbands, children to submit
to parents, and slaves to submit to masters. There is also an element of submission to the
church that can be extrapolated from the concept of church discipline.
http://www.christianworldviewnetwork.com/article.php/1637/Charley_Adams
The theocratic right seeks to establish dominion, or control over society in the name of
God. D. James Kennedy, Pastor of Coral Ridge Ministries, calls on his followers to exercise
godly dominion over every aspect of human society. At a Reclaiming America for
Christ conference in February, 2005, Kennedy said: Our job is to reclaim America
for Christ, whatever the cost. As the vice regents of God, we are to exercise godly dominion
and influence over our neighborhoods, our schools, our government, our literature and arts,
our sports arenas, our entertainment media, our news media, our scientific endeavorsin
short, over every aspect and institution of human society. http://www.theocracywatch.org/
Am I trying to Christianize America? You bet your boots I am! Jesus Christs last
commandment to the Church was: Go ye into all the world, and preach the Gospel to every
creature. (Mark 16:15). I am not only trying to Christianize America, I am trying to

M. Boylan (ed.) International Public Health Policy and Ethics, 91

Springer Science + Business Media B.V. 2008
92 L. Purdy

Christianize every country in the world through the Gospel.D. James Kennedy,
Christianizing America? in America, Return to God, ed. Thomas Wang (Sunnyvale, CA:
Great Commission Center International), p. 92.
I dont know that atheists should be considered citizens, nor should they be considered
patriots. This is one nation under God.George Bush
http://www.geocities.com/CapitolHill/7027/quotes.html
I want you to just let a wave of intolerance wash over you. I want you to let a wave of
hatred wash over you. Yes, hate is good Our goal is a Christian nation. We have a
Biblical duty, we are called by God, to conquer this country. We dont want equal time. We
dont want pluralism.Randall Terry, Founder of Operation Rescue, The News-Sentinel,
Fort Wayne, Indiana, 8-16-93. http://www.geocities.com/CapitolHill/7027/quotes.html

Introduction

Consider these two cases. First, a seventeen-year old girl is pregnant with an
anencephalic fetus. But she lives in a location where abortion is banned. She is in
need of care, and would need to travel elsewhere to obtain an abortion. A court
holds that she can be denied permission to do this. Second, a woman has an ectopic
pregnancy that will kill her if it is not terminated. But she, too, lives in a location
that has banned all abortions, and doctors are afraid they will be prosecuted for the
operation necessary to save her life.
Both situations have arisen because of laws promoted by the Religious Right
(RR), rules allegedly necessary for a morally mandatory culture of life (CL).1 In
the first case, they require that this girl go forward with a pregnancy even though
it is certain that her baby will die shortly after birth. In the second, they put the
pregnant woman at risk of death even where the embryo has no chance of
survival.
Such cases are emblematic of the CL: the RR focuses solely on its allegedly
absolute ban on killing humans. It ignores the consequences of the ban, no matter
how much sufferingor lost livesit causes. It also imposes its judgment that a
fertilized egg is as valuable as a developed individual on a world that, by and large,
disagrees.
Many others and I argue that an emerging consensus among right-wing and
religious forces in support of this so-called culture of life is undermining the liberal
democratic ideal of autonomy in ethics and political life. Despite its attempt to
claim the high moral ground, the motives, means, and alleged goals of the move-
mentat least as exemplified by the Bush administration and its allies (most notably
the Christian Right)are, at best, based on ignorance and are, at worst, thoroughly
dishonest.

1
In these particular cases, the laws were influenced and promoted by the Catholic Church.
However, with respect to its views about contraception and abortion, the Catholic Church can be
seen as a member of the Christian Right, and, along with other non-Christian religions that share
these perspectives, a member of the broader Religious Right.
Exporting the Culture of Life 93

In the US, the Christian Right has made considerable headway in its opposition
to quite widely accepted liberal views about valuable life, family, equality, privacy,
happiness, and autonomy, given its empowering political alliance with George
W. Bushs administration. It emphasizes the stricture against killing humans (at the
expense of by now well-established bioethical principles that prevent suffering and
enhance autonomy) even as it pursues policies that fail to protect workers and citizens
from workplace and environmental risks.
And, its pro-family rhetoric codes for views that roll back the moral and
political clock. By insisting that sex outside of marriage is sinful, as is sex in
marriage not open to conception, the Christian Right, at a stroke, deprives
women of control over their reproductive lives and undermines the preconditions
for participating as equals in a society that still makes few concessions for
women caring for children. At the same time, it declares homosexuality sinful
as well, returning to the bad old days when it was considered permissibleperhaps
even virtuousto discriminate (or worse) against homosexuals. And there is
only one kind of family, the patriarchal family. In the patriarchal family, the wife
is subordinated to her husband, and the children have no rights that might come
into conflict with their parents wishes.
The Christian Rights ambitions extend beyond the borders of the US, however:
it aims to control the entire human population. And, as in the US, the Christian
Right does not merely regard its right to assert these views as Gods mandate, but
it considers acting to impose them by political means intended to restrict alternatives
as the justifiable exercise of its religious freedom.
In many countries, religious and political leaders share important parts of
the Christian Right agenda. For example, its views about sexual and reproductive
issues are consistent with those endorsed by the Vatican, along with those of the
more conservative wings of Judaism and Islam. Thus it makes sense to think in
terms of a RR rather than just a Christian Right.
The RR has not only hijacked the US governments foreign policy, but it has also
begun successfully to lobby at the United Nations (UN). Once again, this activity
is motivated by its conviction that its own religious freedom requires the imposition
of its views on everyone else and that resistance to this program constitutes
persecution. It appears oblivious to the obvious moral point that if anyone has a
right to religious freedom, everyone does.
Many feminists and other progressives might not find this state of affairs a
clarion call to defend liberalism, given their trenchant critiques of the concept.
However, I believe that once the RR goal is understood, the need to defend a
version of autonomy becomes compelling. Indeed, only a unified front on this
issueaiming to defend institutions that protect and promote carefully qualified
rights to self-determination and privacywould help unite opponents of the RR
in getting back a country where people can work in fair and transparent ways
toward their own moral and political visions. The alternative is the current
countless compartmentalized holding actions against attempts to control every
aspect of everyone elses, relegating out-groups to second-class citizenship
(or worse).
94 L. Purdy

The Culture of Life

The phrase culture of life (CL) is clearly intended to be a new, improved model
of pro-life, a term that has looked a bit green around the gills ever since some of
its adherents took to murdering doctors who do abortions. Yet, there seems to be
as yet no careful theoretical articulation of the concept.2
What is clear is that the CL is much more limited than some its critics have
noticed. Its proponents neither have, nor pretend to have, any interest in the quality
of life, in promoting human welfare or happiness, or in reducing pain and suffering.
The alleged focus of the CL is just thatlife itself (and, only human life). Thus it
is impervious to many objections based on those values, once the basic premise
about killing is accepted. And, few seem willing to raise doubts about that basic
premise, perhaps because it has some initial plausibility and also because nobody
wants to be seen to question the alleged word of God.
My theses are that the CL is inconsistent and that it leads to misery. It is
inconsistent because of its reliance on the frail reed of the killing/letting die
distinction, and because of its (variably applied) deontological insistence that
killing is wrong even if failing to kill leads to more deaths. It expands misery
because misery caused by its policies constitutes no objection to them, and, in
fact, it regards misery as the appropriate punishment for failing to follow its
rules.3 This misery falls disproportionately on the shoulders of women, chil-
dren, and gay men, as they benefit most from respect for individual autonomy
in sexual and reproductive matters. This respect for autonomy is so closely
linked with the life allegedly promoted by the CL as to reinforce the suspi-
cion that reinstating patriarchal control is one of its central motivating forces, a
suspicion supported by the RRs forthright assertions that women are to be
subordinated to men. However, it would also be a mistake to ignore the role of
economics in determining where the CL applies and where it is invisible despite
its apparent relevance.
Before investigating these claims in more detail, however, we need to take a
closer look at the epistemological basis for them.

2
It is possible that it is a mistake to imagine that any theoretical articulation of the concept is
relevant here, if one is to take seriously Stephen Pizzos (2005) thesis that Bushs evangelism
explains all his decisions. Even if this is true, however, it seems important to try to understand
what might be said on behalf of these positions.
3
The connection with misery may be even more direct, if as Garret Keizer (2005) suggests that
the right talks about protecting life and tradition, but on some level it is mostly interested in
protecting pain. It does so because of the theological belief that pain holds the meaning of life.
It also does so because of its political belief that justice is based on pain. Whoever owns pain
owns power (p. 56). This thesis clearly bears further investigation.
Exporting the Culture of Life 95

What Is the Religious Right and Why Must We Follow

Its Commands?

While it may be misleading to think of the RR as a monolithic movement, its

members share a common allegiance to the belief that ethics precepts come from
on high rather than from reasoned responses to the human condition. Firstly, these
precepts allegedly come from God, as interpreted by Scripture and self-appointed
spokespersons. Secondly, this sacred source is taken to relieve its current proponents
of any need for internal consistency or attention to other values ignored, or violated
their application, such as preventing suffering, autonomy or freedom, or justice.
Any such ethics will therefore inevitably come into conflict with the first principles
of public health, or more broadly, human welfare.
Although all the members share these assumptions about the origins and nature
of ethical precepts, there are significant variations in their beliefs. This disagreement
both undermines the plausibility of this approach to ethics, and underlines its
inability to compromise in the face of disagreement.
Thus not every policy of the Bush administration is supported by each group
witness Pope John Pauls opposition to the war on Iraq. But there is still much
agreement about policies deemed to be central, and frighteningly, the most extreme
policies are, in some cases, displacing more reasonable ones, such as the traditional
Catholic definition of extraordinary care that would prolong life at the cost of
increased suffering. I take Bush administration policy to represent mainstream
RR views.
How does the RR attempt to take the moral high ground? It claims not only that
its policies are required by God, but also that the sole alternative is a noxious moral
relativism that denies the existence of ethical principles altogether. Its own interpre-
tation of Gods will must therefore form the basis of society, government, and law.
But this view constitutes a false dilemma that sees only two options when others
exist. Ignored is the rich philosophical tradition of ethical and political theories that
ground morality in human needs and desires, some of which provide for significant
individual autonomy.
It also runs afoul of Platos objections to the view that ethics is what the gods
command. To avoid following arbitrary or wicked judgments, we must make a prior
judgment about any authoritys moral standing. But then its mere existence (or, in
the case of God, alleged existence) creates no case for following its commands
(except perhaps to escape punishment for failing to do so), and fails to relieve us of
the labor of determining right and wrong for ourselves. Yet the RR expects us to
take Gods goodness on faith, despite the fact, that as W.K. Clifford argues, we are
morally responsible for what we believe. Flushing out these facts undermines the
RR claim that only (its) religion provides clear, objective, and compelling moral
positions.
Fighting the RRs simplistic position requires that we recognize its roots in the
economic right (ER). The ER, too, reflexively accuses opponents of political
96 L. Purdy

correctness or moral relativism.4 But political correctness turns out to be any claim
that that corporate profit should be limited in the public interesta position that has
been adopted by the RR as well.
And the accusation of relativism, although often repeated, is a misunderstanding
of any moral system that deviates from the rigid and inflexible precepts propagated
by the ER and the RR. To them, morality claims to be a matter of exceptionless
precepts to do (or not do) a particular actregardless of the consequences. Only this
approach constitutes principled ethics, whereas consequentialist ethics that tailor
means to the situation to achieve a specific goal or value is taken as relativistic.
Of course, means are adjusted to circumstances, and thus relative to them, but this is
not at all the same thing as the kind of malignant relativism that denies any common
principles or values. So there are really significant metaethical differences between
the two camps, although the RR also wants to hold that only its particular principles
or values are moral, thus erroneously excluding alternative ones from the moral
realm altogether. The main benefit of this move is to relieve its members of having
to argue for their principles rather than assert that no others exist.
Progressives also tend to recognize the importance (and the difficulty) of making
nuanced moral judgments about a reality they perceive as more multifaceted than
do many on the right. So their recommendations may be more tentative, more subject
to revision as results come in. They also tend to be more willing to trust individuals
to find their own course. This is seen as the policy most likely to lead to optimal
results, given that individuals must live with the consequences of their own
decisions (assuming that society creates safeguards to protect others from serious
harm) and as intrinsically valuable (Mill 2006). The Right finds these approaches
unacceptable, even frightening, and seems to be unable to differentiate them
intellectually from the true moral chaos implied by relativism.5
Articulating liberalism more fully would help the public understand that this
dichotomy (religious dogma/moral relativism) now being pressed on us by the
Right is fallacious. The crucial point is that liberalism can provide a basic political
framework essential for running society well, a framework compatible with significant
latitude for individuals to choose their way of lifeprecisely what the right-wing
fallacy denies. Liberalism holds that limits on freedom require justification, and
includes a robust conception of autonomy that limits government power.6 And
although extreme versions of liberalism have rightly drawn fire for their failure to
recognize our appropriate dependence on each other, it is clear that exercising
significant control over ones life is essential for human happiness, as the next
sections of this chapter will emphasize.

4
See Purdy, 1994.
5
For a good articulation of this point of view, see Ira Chernis (2005). He asserts that the proponents
of the CL fear uncertainty, ambiguity, and change in the realm of moral values. Only commands
from an authority can provide moral principles. Humans are fundamentally flawed and moral
decision-making cannot be left up to them.
6
Liberalism, Stanford Encyclopedia of Philosophy (SEP).
Exporting the Culture of Life 97

In short, the RR would like us to believe that the CLs tenets come straight from
God and therefore require neither justification nor explanation when they appear to
contradict each other or come into conflict with other values (like reducing misery).7
In a pluralistic democracy peopled with critical thinkers, this position would be dead
on arrival. But since that is not the case, we need to examine its specific tenets.

Culture of Life: The Moral Agenda

The CL agenda sees the overriding value of human life allegedly uniting two clusters
of issues, those arising at the beginning and end of life. Let us start by examining
end-of-life issues.

End-of-Life Issues

According to Gilbert Meilaender, the CL holds only that it is wrong to intentionally

end human life, except perhaps in self-defense; thus, it is not vitalism, the view that
human life must be sustained no matter what. Both elements of this position are
problematic. The first prohibits putting those suffering at the end of life out of their
misery. It also prohibits abortion, no matter what the circumstances. The second
sounds like a good idea but the framing of the Schiavo case as murder suggests that
it nonetheless requires that unconscious life be sustained indefinitely.8
The RRs rhetoric in the Schiavo case was especially inconsistent and hypocritical
in light of other Bush policies, such as the Texas Futile Care Law, permitting the
state to withdraw life support from terminal indigent patients, even against their
guardians will (Niman, 2005a, b). In addition, he also approved the execution of
numerous (questionably guilty) individuals. Then there is the war in Iraq, which
may have killed some 600,000 Iraqis, not in self-defense.

7
See, for example, Steve Benen (2004), who cites Wendy Wright, senior policy director for
Concerned Women for America, a conservative womens organization. She promotes abstinence
because it is just a plain healthier way to live. How do we know? When we go outside the order
set by God its harmful to us (p. 124).
8
It is true that her defenders tried to deflect discussion of this issue by maintaining that she was
conscious (or potentially so), but that is clearly a red herring. But Meilaender himself seems to
believe that refusing to end life trumps his rejection of vitalism: He argues that this is (1) because
the body must be cared for, as it is an important part of us; and (2) that we may exercise some, but
not total, control over our deaths. But one need not be a thoroughgoing Cartesian dualist to reject
caring for the mindless body as ghoulish. Nor does deaths inevitability give us any reason not to
control what we can in the service of human well-being. For more arguments about this, see my
review of Daniel Callahans book in Bioethics.
98 L. Purdy

Moreover, the prohibition on killing is applied inconsistently in another way: it

focuses solely on the act of killing, ignoring entirely deaths resulting from failures
to act, even when those deaths are foreseen even if not intended. A single-minded
focus on intention, as suggested by Meilaender, could be useful to proponents of the
CL in explaining why other Bush policies that are causing many other preventable
deaths are held to be consistent with it. Among them are privileging corporations
willingness to increase life-threatening workplace risks or environmental toxins.9
And tax cuts for the rich by defunding social programs providing life-saving services
to the poor and failing adequately to address the racism that shortens the lives of
people of color and the inequalities that, it now turns out, shorten the lives of all
those in hierarchical societies (Daniels et al. 2000) and foreign economic policies
that suit the interests of the US elite (Purdy 2004).10 In every case, the intention is to
achieve some worthwhile goal, not to let die those who stand in its wayeven
though it is clear that those policies will result in additional deaths. But the distinc-
tions between killing and letting die, acting and omitting cannot bear the weight
of those deaths. In my view, this state of affairs demonstrates how ad hoc the CL
strictures about the end of life really are, and how, in practice, they turn out to be
inextricably entwined with the economic interest of the RRs corporate allies.
Finally, virtually every other activity now proscribed by the CL as obviously
immoral can also be redescribed in terms of worthy goals. Thus, physician-assisted
suicide enables patients to escape serious suffering. And, we free up desperately
needed resources when we let the irreversibly comatose die. And, to take cases
from the beginning of life, we enable women to control their bodies and their lives
by increasing (instead of decreasing) access to contraception, provide emergency
contraception (EC) to raped women, and by allowing women with threatening
pregnancies to end their pregnancies.11 And, we enable teens to escape unwanted
pregnancy and sometimes life-threatening STDs by making sure that they all get

9
Just one example: A recent Mother Jones expose of the U.S. Food and Drug Administration
(FDA) failure to heed the warnings about Vioxx, a failure that is estimated to have caused between
88,000 and 139,000 heart attackscausing somewhere between 25,000 and 55,000 deaths. This
failure is a result of industry-friendly policies (Scherer 2005).
10
To be fair, it is important to notice that every US administration for the last 20 years has pursued
similar policies. Clintons Iraq policy was especially egregious. Nonetheless, the point here is that
the contradictions are most shameful when they are coupled with the rhetoric of the CL.
11
From a theoretical perspective, the key question is why the sole arbiter of moral righteousness
should be intention. Intentions certainly matter, but consequences generally matter still more.
Otherwise whitewashed intentions can be used to try to justify any carnage. And even the long-
standing (but morally questionable) Principle of Double Effect (PDE) requires attention to other
factors that would rule many of these policies unacceptable, such as proportionality between an
intended effect and its costs. Rather than intention, the RR might retreat to the deontological judg-
ment that kill is just wrong, no matter what the consequences. However, that would make it diffi-
cult to explain why it is permissible to go to war, or to continence killing abortion doctors. Of
course, it might attempt to argue that there are morally relevant differences between different
types of killing, such that some are permissible, others not; but then one gets into the same sorts
of discussion about justifying factors as with intention.
Exporting the Culture of Life 99

comprehensive sex education. And, we intend to prevent or cure horrible diseases

by pursuing stem cell research, etc.

Beginning-of-Life Issues

The theoretical connection between these end-of-life issues and beginning-of-life issues
is somewhat puzzling, as proscriptions against ending life do not necessarily imply that
new life must be created wherever possible. So far as I can see, the only possible link
would be transferring the proscription of killing from human lives to sperm. Only then
might it be possible to understand the demand that only sex open to conception is
morally permissible, as any other sexual activity will kill all the sperm in any particular
emission. Attempting to discover the roots of this position must be left for another day,
although one might well find them in the old discredited beliefs that sperm provided the
all-important Aristotelian form, or indeed even the homunculus.
The lack of any obvious and compelling link unifying the strictures about the
end and beginning of life raises serious questions about the justification of the sexual
and reproductive agenda, questions rendered more urgent by the fact that beginning-
of-life issues turn out to be inextricably entwined in an understanding of sex as so
intrinsically wicked that it can be redeemed only by producing babies. Sex engaged
in for pleasure warrants unwanted babies and disease, even where morally permis-
sible ways to prevent them exist, and even if this leads to preventable deaths.12 Only
this understanding can explain the otherwise unintelligible collection of positions
in this realm: opposition to comprehensive sex education, contraception, condoms,
EC, abortion, and the human papillomavirus (HPV) vaccine.
For proponents of the CL, sex education is just indoctrination into the RR view
that sex is for marriage and procreation only. Information about how to avoid or
terminate pregnancy, and the risks of sexually transmitted disease is incomplete,
inaccurate, or missing altogether.13
The alleged justification for this approach is protecting children against the
dangers of sex. What are these dangers? First, concerns its intrinsic wrongness
(in the wrong circumstances). And second, its consequences: babies and disease.
This position requires that the intrinsic wrongness of sex be demonstrated, which
the RR fails utterly to do. It also requires that abstinence-only effectiveness in
reducing pregnancy and disease be demonstrated. Yet there is no credible evidence
that it does reduce pregnancies or STDs,14 and one study suggests that it may

12
Notice that there is good evidence that members of the RR are themselves unable to live
anywhere near their own principles (Niman 2005b).
13
See Waxman (2004) The Content of Federally Funded Abstinence-Only Education Programs,
prepared for Rep. Henry A. Waxman, December 2004, available at www.democrats.reform.house.
gov.
14
Ibid., p. 3.
100 L. Purdy

increase risk.15 Many studies show that comprehensive sex education delays sex and
promotes the use of contraception.16
What abstinence-only sex education does is increase the dangers of sex to those
who do not follow its rules. It is therefore hard to avoid the conclusion that the real
goal is punishing rebels with babies and STDs, even where the babies cannot be
well taken care of, and the STDs kill not only the miscreants but all the others with
whom they subsequently have sex. This approach is thus incompatible with the CL,
let alone any real concern for human welfare.
At the same time, some justify the war on contraception by such profound com-
ments as, I would like to outlaw contraception contraception is disgusting
people using each other for pleasure (Joseph Scheidler, Pro-Life Action League)
and I dont think Christians should use birth control. You consummate your
marriage as often as you likeand if you have babies, you have babies (Randall
Terry, of abortion clinic bombing fame).17 It seems to me that such comments reveal
all too clearly the underlying hatred and fear of pleasurable sex, as well as the
obsession with controlling it at all costs that seems to explain the RR position.
Only such a motive could explain other aspects of the CL approach to sex and
reproduction, such as the belief that the public should be deprived of scientifically
accurate information about contraceptives. Why else would the Bush administration
pressure the Centers for Disease Control (CDC) to spread unfounded doubts about
condoms alleged ineffectiveness, deleting instructions for using them effectively,
and results of studies showing that scientifically correct information about them
does not promote sexual activity? (Union of Concerned Scientists 2004).
And, why else would it encourage pharmacists to refuse to fill prescriptions for
contraceptives for reasons of conscience (no matter how poorly conceived18)even
though it has been shown that access to EC headed off some 51,000 abortions in
just one year and even in cases of rape? (Baumgartner 2004, 66).
And, why else would it pursue policies that reduce access to family planning
services, both in the US and abroad? And why else would gay mens use of condoms
to prevent the spread of life-threatening disease be condemned as immoral?19

15
Ibid., p. 4.
16
Ibid.
17
Both comments are cited by Stephen Pizzo, 2004. At least Terry seems to leave room for
non-Christians to make their own choices, if they can find a pharmacist willing to dispense them!
Pizzos article describes the many members of the religious right who now hold crucial positions
in the federal agencies such as the Department of Health and Human Services. Among them are
Dr. Alma Golden, Tom Coburn, Dr. Joseph McIlhaney, Jr., Dr. W. Hager, Dr. Joseph B. Stanford,
and Susan A. Crockett.
18
For example, pharmacists may mistakenly believe that a given contraceptive is an abortifacient.
See Feminist Daily News Wire (2005) AMA Resolution Says Pharmacists Should Be Required
to Fill Prescriptions. The National Womens Law Center reports that such conscience clauses
have been passed by 4 states, and 11 more may do so.
19
Or more revealing of such hostility toward homosexuals that it prefers to see them dead rather
than happy.
Exporting the Culture of Life 101

As Katha Pollitt (2005) points out in her brilliant Virginity or Death!: If

preventing abortion was what they cared about, theyd be giving birth control and
emergency contraception away on street corners.
Clinching my case is the RRs hostility toward an HPV vaccine that could save
thousands of women a year from cervical cancer (Harris 2005). Instead of celebrating
the fact that the vaccine could potentially save 4,000 women a year from horrible
deaths from cervical cancer in the US alone, Bridget Maher of the Family Research
Council opines that, Giving the HPV vaccine to young women could be poten-
tially harmful because they may see it as a license to engage in premarital sex
(Pollitt 2005).
Finally, as we have seen, the RR strictures against abortion, as shown by the
proposed legislation in South Dakota and elsewhere, are even more absolute than
those of the Catholic Church, forbidding abortion even to save a womans life.20
Nothing could show more clearly that pursuing its harsh and narrow sexual
agenda is far more important to the RR than preventing unnecessary disease or
death. It is thus evident that the CL is diametrically opposed to any public
health ethic based on the harm principle. Indeed, despite its name, which
might suggest concern about public morbidity and mortality, it is a devastating
form of legal moralism that undermines the principles of public health. This
state of affairs is even more evident in the international realm, as we will see
shortly.
Some critics seem prepared to characterize these policies as merely misguided.
But it would require monumental stupidity to think that they are required by (or
even consistent with) any tenable concern for life. More to the point, monumental
stupidity alone cannot explain the RRs willingness to try to scare people into fol-
lowing its sex agenda by suppressing or twisting scientific evidencewhat it calls
junk science when others do it. Abstinence-only education, the disparagement of
condoms, and insistence on a causal link between abortion and breast cancer are all
evidence of its readiness to politicize science.21 Why? Because it knows that the
moral case it attempts to mount is unpersuasive because it cannot show the harm
in alternatives to the CL sexual ethic. So science is hijacked to demonstrate harm
after all. A strange approach to ethics from groups who question whether atheists
could be citizens, or who, indeed, have no problem announcing that they will all
burn eternally in hell.
The RR has no qualms about attempting to impose this nightmare of an ethic on
all US citizens. It is also trying to impose it on the entire human population.

20
The Principle of Double Effect allows for abortions where the goal is to save the pregnant
womans life when the death of the fetus is a foreseen but not intended consequence. See also
Susan Nicholson (1978) for a brilliant critique of its rules.
21
UCS 2004, 11. The report goes on to lay out many more instances of political manipulation of
science (ibid., 11).
102 L. Purdy

The International Scene

According to the RR, this biblically mandated control over life and death decisions
(along with every other aspect of life) is not just about the US. On the contrary, it
holds for the entire world. What steps have its members taken to pursue this goal?
It colludes with the Bush administration to push for these policies wherever it can.
It lobbies at the UN, and it makes common cause with like-minded allies in foreign
countries. We have already seen what the aims are, although the means may differ;
because of poverty and other factors, the consequences may be far worse.
Most Americans are probably already familiar with the so-called global gag rule
that prohibits foreign nongovernmental organizations (NGOs) receiving US funding
from the United States Fund for International Development (USAID) or the
Department of State from either counseling women about abortion or providing
abortions, even with their own money.22 Although the US version of the gag rule
was found constitutional, in a poorly reasoned case, Rust v. Sullivan, it was repealed
by Bill Clinton. Unfortunately for the women and children of the rest of the world,
George W. Bush reinstated it for them on the first day of his presidency. The message
clearly is that foreign women do not deserve the same right to autonomous choices
as American women23; or, perhaps, that restrictions on American women will be
imposed once again, as soon as the climate is right.
Moreover, the consequences for foreign women in impoverished countries are
likely to be even more severe than for American women. Many women live in
conditions that are almost unimaginable for Western women, where sexual and
reproductive services are a matter of life or death: in Afghanistan, for instance,
pregnancy is a leading cause of death, and one of every six women will die from it
(Page 2006, 121). The statistics in every sector are horrifying, including the rapid
spread of HIV/AIDS, especially in women.
Clinics offering family planning services of all sorts had to decide whether to
accept these restrictions, putting their clients seriously at risk, or to refuse, signifi-
cantly reducing the funds available for all services (including contraceptive services).24
In the first case, their clients will not hear about the importance of getting safe, legal
abortions rather than unsafe, illegal ones. Nor will they get information about

22
Chamberlain (2007) and International Womens Health Coalition. Indeed, this report reminds us
that the prohibitions go much further: [A]dditionally, the groups cannot engage in any public
debate or disseminate any information regarding the health hazards of unsafe abortion, express
support for any existing laws that support safe abortion, or provide legal abortion services with
non-US funding.
23
See Kaplan (2006) and New York Times (2003) The War Against Women.
24
According to Mary-Ann Stephenson, this policy has forced some clinics to close, cut services,
or increase fees: [S]hipments of US condoms and contraceptives have ceased to 16 developing
countries. Family planning organizations in another 16 countries have lost access to condoms
because they have refused to accept the restrictions (It Will Take All Our Energy to Stand Still:
Bushs America is waging a global battle against womens rights, The Guardian, March 8, 2005;
http://www.guardian.co.uk/comment/story/0,,1432589,00.html, accessed March 22, 2007.
Exporting the Culture of Life 103

whether abortion would be in their best interest or not, or even whether it is necessary
to safeguard their health, and their life. In the second case, they are less likely to
get help with the contraception or protection from STDs. Since HIV/AIDS is
spreading quickly in many Third World countries, and women, for both physical
and social reasons, are now most at risk, this policy is obviously at odds with the
stated goals of the CL.
The Bush administration has also refused to contribute to the United Nations
Population Fund (UNFPA). UNFPA does not support abortions, despite the allega-
tion by an antifamily planning group that it has helped China advance its coerced
abortion and sterilization program, allegations that have been demonstrated to be
false.25 What UNFPA does is provide safe motherhood services, contraceptives,
fistula repair, and HIV/AIDS prevention to women in 140 developing countries
worldwide (Bushs Other War). Failing to fund these items obviously increases
deaths from a wide variety of causes.
In a related move, the Bush administration also now requires the NGOs (both
US and foreign) it funds to show in a variety of ways that they oppose prostitution,
even where those actions undermine the goal of limiting the spread of HIV.26
Moreover, Bushs overall response to the needed (and desired) attempt to limit HIV
worldwide, the Presidents Emergency Plan for AIDS Relief (PEPFAR) has become
more of a vehicle for spreading the RR sexual and reproductive agenda, than for
spreading protection from HIV. It emphasizes ABCabstinence, be faithful, and
condomswith the condoms a distant third; one-third of HIV money must be spent
on abstinence-until-marriage education (PEPFAR 2007). Because of this, rates of
HIV are now going up in Uganda, whereas in countries like Cambodia where con-
doms are everywhere, they are going down (Kristoff 2007). This policy puts women
especially at risk in a variety of ways, but most notably when they marry and their
husbands either already have HIV/AIDS or are unfaithful.
These examples of exporting the CL, while just the tip of the iceberg, should be
sufficient to show that RR activities are, if anything, even more harmful beyond our
borders than within them.

Conclusion

So, is there a morally irresistible CL? Its theoretical basis is, at best, dubious. And,
the plausibility of its principles is undermined by their collapse in the face of competing
economic interests, and by the incompatible sex agenda now being sold as integral to
it. An informed and critically inclined public would have no trouble rejecting this
house of cards. Instead, the citizens are deeply divided about these issues.

25
For a full account of this story, see Page 2006, chap. 6, Pro-Lifers Abroad.
26
Bushs Other War. This useful document lists many other steps taken by the Bush administration
to limit womens sexual and reproductive freedom, both in the international and national realms.
104 L. Purdy

Only some form of liberalism that includes church/state separation can accom-
modate such diversity, leaving room for people to make their own judgments about
the basis of morality, economic justice, and sexual ethics.27 Only liberalism can
make space for pointing out the hypocrisy of a movement that pretends to protect
life, while attempting to suppress sex, conveniently deflecting attention from the
deadly economic policies it condones.
Liberalism encourages individuals (and groups) to develop their own preferred
ways of life, which might include preferences about how others should liveeven
in realms where no one is harmed. But although liberal principles support debate
and discussion about such issues, they do not support political activity intended to
deprive others of comparable choices about their own way of life. They do support
a public health ethic based on good science and the harm principle.
How would a liberal society with a public health ethic based on the harm principle
deal with the two cases I started out with? For the girl pregnant with the anen-
cephalic fetus, her physical and emotional well-being is clearly more threatened by
forcing her to go through with the pregnancy. Carrying a pregnancy to term is riskier
to her health than an early second-trimester abortion. And, abortion would clearly
be better for her mental health, not to mention far more humane, than forcing her
to go through with the pregnancy only to watch her child die. The same goes for
the woman with the ectopic pregnancy: her life can be secured by ending a preg-
nancy that cannot produce a child anyway. Putting her life at risk because of an
arbitrary distinction between killing and letting die is morally untenable. In such
cases, because of the constraints of biology, the CL savages womens lives to
protect even doomed embryos or fetuses. It is hideously insensitive to the values
most people hold, values that can be better justified than the inconsistent, cruel, and
rigid values promoted by the CL.
This state of affairs makes it transparently clear that killing is not always the
greatest evil, contrary to what the RR proposes. Liberalism leaves room for those
who voluntarily adopt such a scheme to do so, but it also enjoins the RR against
imposing it on those who do not.
These judgments get much more complicated beyond US borders, of course,
since other countries may themselves have governments that fail to recognize the
liberal principles that provide autonomy in such cases. In fact, both these cases are
drawn from other countries (Ireland and El Salvador). But if the RR has its way,
they will happen in the US too.
Yet if we appreciate the freedom liberalism bestows on us, then universalizability
justifiesand requiresthat we support it for all. Thus even if foreign governments
fail in this respect, it is reasonable to take some steps to help those who are harmed
by this failure to gain their voices. The extent of such steps is naturally a matter for
debate, and will vary according to the circumstances. But such activity is politically

27
This liberal regime must ultimately be based on the harm principle. Many issues remain, of
course, starting with the extent to which parents can restrict childrens access to sex education. See
Purdy, 1992 for an argument that childrens rights to education trump parental views.
Exporting the Culture of Life 105

justifiable, whereas the current push by the RR is questionable. Given the conse-
quences of that push, one might well hold that it deprives foreigners of rights
members of the RR take for granted for themselves. Moreover, it constitutes (at
best) criminal negligence or (at worst), murder. No doubt some who support the CL
are incapable of appreciating these points. However, they are so obvious to anybody
who thinks critically that it is hard to resist the conclusion that the RR is simply
consolidating its own power, using the CL to cynically manipulate those who cannot
think straight about its claims. Nothing short of life in The Handmaids Tale
(Atwood 1998) will satisfy it.

References

Atwood, Margaret. (1998) The Handmaids Tale. New York: Knopf.

Baumgartner, Jennifer. (2004) Roe in Rough Waters, The W Effect: Bushs War on Women, ed.
Laura Flanders. New York: The Feminist Press.
Benen, Steve. 2004 Strange Bedfellows: Conservative Christians and the Bush Administration
Are Aggressively Pushing a Controversial Pro-Family Agenda on the International Stage
and Theyre Teaming Up with Islamic Theocracies to Do It, Church and State, Vol. 55, no. 8,
9.1.02, reprinted in The W Effect: Bushs War on Women, ed. Laura Flanders. New York: The
Feminist Press, 121128.
Feminist Daily News Wire. (2005) AMA Resolution Says Pharmacists Should Be Required to Fill
Prescriptions, June 22, 2005, Feminist Daily News Wire, on TruthOut: http://www.truthout.org
International Womens Health Coalition. (2007) Bushs Other War: The Assault on Womens
Sexual and Reproductive Health and Rights, Report from the International Womens Health
Coalition, available online at www.bushsotherwar.org; accessed March 22, 2007.
Chamberlain, Pam. (2007) Undoing Reproductive Freedom Christian Right NGOs Target the
United Nations, PublicEye.org, http://www.publiceye.org/reproductive_rights/UNdoingRepro
FreedomSimple.html, accessed March 22, 2007.
Chernis, Ira. (2005) Culture of Life is a Culture of Fear, CommonDreams.org, April 1, 2005.
Daniels, Norman, Bruce Kennedy, and Ichiro Kawachi (2000) Justice is Good for Our Health,
Is Inequality Bad for Our Health? Boston, MA: Beacon Press, 333.
Harris, Lynn. (2005) on Nerve.com; posted 5/27/2005 at www.nerve.com/regulars/rawnerve/022/,
accessed May 30, 2005.
Kaplan, Esther. (2006) Pledges and Punishment, posted on Alternet, March 15, 2006, www.
alternet.org/story/33284/.
Keizer, Garret. (2005). Life Everlasting: The Religious Right and the Right to Die, Harpers
Magazine, February 2005: 5361
Kristoff, Nicholas D. (2007) When Prudishness Costs Lives, The New York Times, December
19, 2006, available at http://select.nytimes.com/2006/12/19/opinion/19kristof.html?_r=1,
accessed March 22, 2007.
Mill, John Stuart. (2007) On Liberty, ed. Michael B. Mathias. New York: Longman.
New York Times. (2003) The War Against Women, January 12, 2003; available at http://www.
umich.edu/umsfc/nytimes.html, accessed March 22, 2007.
Nicholson, Susan T. (1978) Abortion and the Roman Catholic Church. Knoxville, TN: University
of Tennessee.
Niman, Michael I. (2005a) A Culture of Life? ArtVoice 4-7-05. Accessed April 7, 2005 at http://
mediastudy.com/articles/av4-7-05.
. (2005b) Extreme Hypocrisy: The Sex Lives of Republicans, ArtVoice5-26-05. At http://
mediastudy.com/articles/av5-26-05.html, accessed May 27, 2005.
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Page, Cristina. (2006) How the Pro-Choice Movement Saved America: Freedom, Politics, and the
War on Sex New York: Basic Books.
PEPFAR. (2007) Watch, http://www.pepfarwatch.org/, accessed March 22, 2007.
Pizzo, Stephen. (2004) The Christian Taliban, Alternet, Posted March 28, 2004
. (2005). Keeping it Simple, Stupid, posted on Alternet.org on June 28, 2005. www.alternet.
org/story/23183/ accessed June 28, 2005.
Pollitt, Katha. (2005) Virginity or Death! The Nation, May 30, 2005. On the web at www.thenation.
com/doc.mhtml?i=20050530&s=pollitt, accessed May 16, 2005.
Purdy, Laura. (1992) In Their Best Interest: The Case Against Equal Rights for Children. Ithaca,
NY: Cornell University Press.
. (1994). Politics and the College Curriculum, in University Neutrality and Academic
Ethics, ed. Robert L. Simon. Lanham, MD: Rowman & Littlefield.
. (2004) The Politics of Preventing Premature Death, Public Health Policy and Ethics, ed.
Michael Boylan, Dordrecht: Kluwer:167186.
Scherer, Michael. (2005) The Side Effects of Truth, Mother Jones, May/June 2005: 7174.
Union of Concerned Scientists. (2004) Scientific Integrity in Policymaking: An Investigation into
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May 25, 2005.
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Programs, December 2004, available at www.democrats.reform.house.gov.
 Part II
Money and Poverty
International Health Inequalities
and Global Justice*

Norman Daniels

Abstract When are international inequalities in health unjust? This discussion falls
short of providing an answer because we remain unclear just what kinds of obliga-
tions states and international institutions and rule-making bodies have regarding
health inequalities across countries. To arrive at a real answer, we must carry out the
task of explaining the substance of international obligations for the various kinds of
cooperative schemes, international agencies, and international rule-making bodies
in order to specify when the internationally socially controllable factors affecting
health are justly distributed and regulated.

Keywords Global health care, distributive justice, Rawls, human rights, interna-
tional property rights

Introduction

Disturbing international inequalities in health abound. Life expectancy in Swaziland

is half that in Japan.1 A child unfortunate enough to be born in Angola has 73 times
as great a chance of dying before age five as a child born in Norway.2 A mother
giving birth in southern sub-Saharan Africa has a 100 times as great a chance of
dying from her labor as one birthing in an industrialized country.3 For every mile
one travels outward toward the Maryland suburbs from downtown Washington DC
on its underground rail system, life expectancy rises by a yearreflecting the race
and class inequities in American health.4 Are the glaring, even larger, international
health inequalities also unjust?
All of us no doubt think these inequalities are grossly unfortunate. Many of us
think they are unfair or unjust. Why should some people be at such a health

* This essays relies upon material presented in Daniels (2008).

1
40 vs. 80+ years. http://www.os-connect.com/pop/p1.asp?whichpage=10&pagesize=20&sort=Country
2
http://www.unicef.org/sowc00/stat2.htm, accessed August 23, 2005
3
WHO/UNICEF/UNFPA, http://www.childinfo.org/eddb/mat_mortal/
4
Michael Marmot, presentation at Harvard School of Public Health, 2006.

M. Boylan (ed.) International Public Health Policy and Ethics, 109

Springer Science + Business Media B.V. 2008
110 N. Daniels

disadvantage through no fault of their own, losers in a natural and social lottery
assigning them birth in an unhealthy place? Others among us are troubled by the
absence of the kinds of human relationships that ordinarily give rise to the claims of
egalitarian justice that we make on each otherfor example, being fellow citizens
or even interacting in a cooperative scheme. Who has obligations of justice to reduce
these international inequalities? And do those obligations hold regardless of how the
inequalities came about? What institutions are accountable for addressing them?

When are International Inequalities in Health Unjust?

Health inequalities between social groups count as unjust or unfair when they result
from an unjust distribution of the socially controllable factors that affect population
health and its distribution (Daniels et al. 1999; Daniels 2008). It is possible to use
Rawls account of justice as fairness to give content to what an ideally just distribu-
tion of the socially controllable factors would be. Specifically, Rawls (1971) prin-
ciples of justice as fairness assure equal basic liberties and the worth of political
participation rights; assure fair equality of opportunity through public education,
early childhood supports, and appropriate public health and medical services; and
constrain socioeconomic inequalities in ways that make the worst-off groups as well
off as possible. Together, this distribution of the key determinants of population
health would significantly flatten the socioeconomic gradient of health and would
minimize various inequities in health, including race and gender inequities.
Judged from this ideal perspective, there are indeed many health inequitiesby race
and ethnicity, by class and caste, and by genderin many countries around the world,
both developed and developing. At the same time, not all health inequalities between
social groups count as inequities. For example, the health inequality that results when a
religious or ethnic group achieves better health outcomes than other demographic
groups because of special dietary or restrictive sexual practices would not count as an
inequity if appropriate health education were available to the other groups.
This account, however, only tells us when health inequalities between groups in
a given society are unjust, not when inequalities between different societies are. It
tells us what we as fellow citizens owe each other regarding the promotion and
protection of health, but not what other societies owe, if anything, by way of
improving the health of the population in less healthy societies. The account, for
example, fails to address this issue: suppose countries A and B each do the best they
can to distribute the socially controllable factors affecting health fairly, and, as a
result, there are no subgroup inequities within them. Nevertheless, health outcomes
are unequal between A and B because A has more resources to devote to population
health than B. Is the resulting international inequality in health a matter of justice?
Suppose we vary the case: Now B, whether or not it has resources comparable to
A, fails to protect its population health as best it can, leading again to population
health worse than As. Is the resulting health inequality a matter of international
justice? The Rawlsian account of justice and health informs us about intra-societal
International Health Inequalities and Global Justice 111

obligations to eliminate health inequities, but it is silent about important questions

of international justice.
Recasting the problem as an issue of human rights, specifically a human right to
health and health care,5 does not help us answer these questions about international
justice for two reasons. First, the international legal obligation to secure a human
right to health for a population falls primarily on each state for its own population.
Although international human rights agreements and proclamations also posit inter-
national obligations to assist other states in realizing human rights (CESCR 2000),
the international obligations cannot become primary in the human right to health
and health care. External forces cannot assure population health across national
boundaries in the way they might intervene to prevent the violation of some other
rights, even when they can afford some assistance. The primacy of domestic
responsibility arises because assuring a right to the highest attainable level of
physical and mental health requires securing a broad cluster of rights that impact
on health by establishing legal structures and other institutions that properly distrib-
ute the socially controllable factors affecting health.
Second, even when a right to health is secured to the degree it is possible to do so
in different states, health inequalities between them may still exist. Since conditions
do not always permit everything to be done to secure a right in one country that may
be feasible in another, the right to health and health care is viewed as progressively
realizable. Reasonable people may disagree about how to best satisfy this right, given
the trade-offs priority setting in health involves (Daniels 2008, Ch. 12). Consequently
some inequalities may fall within the range of reasonable efforts at progressive reali-
zation of a right to health. In addition, because of their unequal resources, different
states may achieve unequal health outcomes while still securing a right to health and
health care for their populations. Arguments that depend on appeals to human rights
cannot tell us whether these inequalities are unjust and remain silent on what obliga-
tions better-off states have to address these inequalities.
Though nearly all people recognize some international humanitarian obligations
of individuals and states to assist those facing disease and premature death, wherever
they are, there is substantial philosophical disagreement, even among egalitarian
liberals, about whether there are also international obligations of justice to reduce
these inequalities and to better protect the rights to health of those whose societies
fail to protect them as much as they might. Nagel (2005), who affirms these
humanitarian obligations, argues that socioeconomic justice, which presumably
includes the just distribution of health, applies only when people stand in the
specific relation to each other that is characterized by a state. Specifically, concerns
about equality are raised within states by the dual nature of individuals both as

5
The right is affirmed inter alia, in article 25, paragraph 1, of the Universal Declaration of Human
Rights, article 12 of the International Covenant on Economic, Social and Cultural Rights and arti-
cle 24 of the Convention on the Rights of the Child. See http://www.unhchr.ch/Huridocda/
Huridoca.nsf/TestFrame/267fa9369338eca7c1256d1e0036a014?Opendocument, accessed August
23, 2005.
112 N. Daniels

coerced subjects and as agents in whose name coercive laws are made. Rawls
(1999) also did not include international obligations to assure a right to health on
the list of human rights that liberal and decent societies have international obli-
gations of justice to protect.
This statist view encounters a strong counter-intuition. Remember the child
who is so much more likely to die before age five in Angola than the one in Norway,
or the sub-Saharan African mother who is 100 times more likely to die in childbirth
than one in any industrialized country. Many of us think there is something not just
unfortunate and deserving of humanitarian assistance, but something unfair about
the gross inequality.
Those who claim the gross health inequalities are unjust have quite different,
incompatible ways of justifying that view. For example, those who believe that
any disadvantage that people suffer through no fault or choice of their own is unjust
would assert that the disadvantage facing the Angolan child is therefore unjust. The
underlying principle of justice is applied to individuals wherever they are in
the cosmos and regardless of what specific relationships they stand in to others
contrary to the RawlsNagel account, which applies principles of justice to the
basic structure of a shared society. The disadvantage of the Angolan child
might also be thought unjust by those who, like Rawls or Nagel, think princi-
ples of justice are relational and apply only to a basic social structure that
people share, but who, unlike Rawls or Nagel, believe we already live in a
world where international agencies and rule-making bodies constitute a robust
global basic structure that is appropriately seen as the subject of international
justice developed perhaps through a social contract involving representatives
of relevant groups globally (Beitz 1979, 2000). Fair terms of cooperation
involving that structure would, some argue, reject arrangements that failed to
make children in low-income countries as well off as they could be. Clearly,
there may be more agreement about some specific judgments of injustice than
there is on the justification for those judgments or on broader theoretical
issues.
I shall briefly examine two ways of trying to break the stalemate between statist
and cosmopolitan perspectives. One approach aims for a minimalist (albeit cosmo-
politan) strategy that focuses on an international obligation of justice to avoid
harming people by causing deficits in the satisfaction of their human rights
(Pogge 2002, 2005b). It is a minimalist view in the sense that people may agree on
negative duties not to harm even if they disagree about positive duties to aid. This
approach handles some international health issues better than others, and to identify
its limitations more clearly, I shall distinguish various sources of international
health inequalities, some of which are not addressed by negative duties. A more
promising (relational justice) approach, which I can only briefly illustrate, requires
that we work out a more intermediary conception of justice appropriate to evolving
international institutions and rule-making bodies, leaving it open just how central
issues of equality would be in such a context (Cohen and Sable 2006). Properly
developed, such an approach may address more of the sources of international
health inequalities.
International Health Inequalities and Global Justice 113

Harms to Health: A Minimalist Strategy

If wealthy countries engage in a practice or policyor impose an institutional

orderthat foreseeably makes the health of those in poorer countries worse than it
would otherwise be, specifically, making it harder than it would otherwise be to
realize a human right to health or health care, then, Pogge (2005b) argues, it is
harming that population by creating this deficit in human rights. Since this harm
is defined relative to an internationally recognized standard of justice, the protec-
tion of human rights, Pogge concludes that imposing the harm is unjust. Moreover,
if there is a foreseeable alternative institutional order that would reasonably avoid
the deficit in human rights, there is an international obligation of justice to produce
the rights-promoting alternative.
There remains some lack of clarity about how the baseline against which harm
is measured is specified. When is there a deficit in a human right to health?
Whenever a country fails to meet the levels of health provided, say, by Japan, which
has the highest life expectancy? Or when it fails to meet whatever level of health a
health-optimizing international order might achieve? Or is there some other,
unspecified standard? Consider two examples.

The Brain Drain of Health Personnel

The brain drain of health personnel from low-income to Organisation for Economic
Co-operation and Development (OECD) countries may most clearly exemplify
Pogges concerns. Rich countries have harmed health in poorer ones by solving their
own labor shortages of trained health care personnel by actively and passively attract-
ing immigrants from poorer countries. In developed countries such as New Zealand,
the United Kingdom, the United States, Australia, and Canada, 2334% of physicians
are foreign-trained. In 2002, National Health Service (NHS) in the United Kingdom
reported that 30,000 nurses, some 8.4% of all nurses, were foreign-trained.
The situation that results in developing countries is dire. Over 60% of doctors
trained in Ghana in the 1980s emigrated overseas (WHO 2004). In 2002 in Ghana 47%
of doctors posts were unfilled and 57% of registered nursing positions were unfilled.
Some 7,000 expatriate South African nurses work in OECD countries, while there are
32,000 nursing vacancies in the public sector in South Africa (Alkire and Chen 2004).
Whereas there are 188 physicians per 100,000 population in the United States, there
are only 1 or 2 per 100,000 in large parts of Africa. The brain drain does not cause the
entire inequality in health workers, but it significantly contributes to it.
International efforts to reduce poverty, lower mortality rates, and treat HIV/
AIDS patientsthe Millennium Development Goals (MDG) agreed upon in
2000are all threatened by the loss of health personnel in sub-Saharan Africa. An
editorial in the Bulletin of WHO points out that the MDG goals of reducing
mortality rates for infants, mothers, and children under five cannot be achieved
without a million additional skilled health workers in the region (Chen and
114 N. Daniels

Hanvoravongchai 2005). The global effort to scale up antiretroviral treatments

(ARTs) poses a grave threat to fragile health systems, for its influx of fundshardly
a bad thing in itselfmay drain skilled personnel away from primary care systems
that already are greatly understaffed.
What about causes? There is both a push from poor working conditions and
opportunities in low-income countries and a pull from more attractive conditions
elsewhere. Is this simply the market at work, backed by a right to migrate?
Pogges argument about an international institutional order has more specific
grip than the vague appeal to a market. When economic conditions worsened in
various developing countries in the 1980s, international lenders, such as the World
Bank and International Monetary Fund (IMF), insisted that countries severely cut
back publicly funded health systems as well as take other steps to reduce deficit
spending. In Cameroon, for example, in the 1990s, measures included a suspension of
health worker recruitment, mandatory retirement at 50 or 55 years, suspension
of promotions, and reduction of benefits. The health sector budget shrank from
4.8% in 1993 to 2.4% in 1999, even while the private health sector grew (Liese
et al. 2004). As a result, public sector health workers migrated to the private sector
and others joined the international brain drain. Cost cutting imposed on the country
led to cuts in the training of health workers, increasing the shortage. The interna-
tional institutional order thus increased the push and at the same time harmed the
health system in various ways.
The pull attracting health workers to OECD countries is also not just diffuse eco-
nomic demand. Targeted recruiting by developed countries is so intensive that it has
stripped whole nursing classes away from some universities in the South. In 2000, the
Labor Government in the United Kingdom set a target of adding 20,000 nurses to the
NHS by 2004. It achieved the goal by 2002. The United Kingdom absorbed 13,000
foreign nurses and 4,000 doctors in 2002 alone. Recruitment from EU countries was
flat (many of these countries also face shortages in face of aging populations), but
immigration from developing countries continued, despite an effort to frame a policy
of ethical recruitment (Deeming 2004). Arguably, even if there were a diffuse eco-
nomic pull, in the absence of active recruiting the harm would be much less.
The remedy for this harm is not a prohibition on migration, which is protected
by various human rights. The United Kingdom has recently announced a tougher
code to restrict recruitment from 150 developing countries. In addition it has initi-
ated a US$100 million contribution to the Malawi health system aimed at creating
better conditions for retaining health personnel there. The United Kingdom has thus
taken two steps that are intended to reduce both the push and the pull behind the
brain drain. Other countries have not followed suit.

International Property Rights and Access to Drugs

The minimalist strategy becomes harder to apply in a clear way to other international
health issues. The problem of international property rights and the incentives they create
goes beyond the issue of access to existing drugs, such as the antiretroviral cocktails that
International Health Inequalities and Global Justice 115

were the focus of attention in recent years.6 Big Pharma has long been criticized for a
research and development bias against drugs needed in developing country markets.
Indeed, it has responded to existing incentives by concentrating on blockbuster drugs
for wealthier markets, including many me too drugs that marginally improve
effectiveness or reduce side effects slightly. Funding the research needed to develop a
vaccine against malaria, for example, has fallen to private foundations.
Do intellectual property rights and the incentive structures they support create a
foreseeable deficit in the right to health that can be reasonably avoided? Pogge
(2005b) argues that they do. Nevertheless, many drugs developed by Big Pharma
under existing property right protections have filtered into widespread use as generics
on essential drug formularies in developing countries. Health outcomes in those
countries are much better than they would be absent such drugs. Since many of
these drugs would not have been produced in the absence of some form of property
right protections, people are not worse off than they would be in a completely free
market with no temporary monopolies on products.
Arguably, however, different property right protections and different incentive
schemes would make people in these poor countries with poor markets better off
than they currently are. Which schemes ought we to select? Pogge (2005a) pro-
poses that we revise incentives for drug development by establishing a tax-based
fund in developed countries that would reward drug companies in proportion to the
impact of their products on the global burden of disease. For example, drugs that
meet needs in poor countries with very high burdens of disease would yield greater
payment to drug companies, even if the drugs are disseminated at a cost close to the
marginal cost of production. The tax, he admits, would be hard to establish, but it
would be offset in rich countries by lower drug prices. The program could be limited
to essential drugs leaving existing incentives in place for other drug products.
Even so, the tax and thus the incentives could vary considerably, presumably with
consequences of different magnitude for the global burden of disease. How do we
pick which alternative to use as a baseline against which a deficit in the right to
health is specified? Pogge does not tell us.
Leaving aside the problem of vagueness, Pogges proposal cannot be justified
by appealing to the no harm principle alone. The proposed incentive fund would
better help to realize human rights to health, as Pogge argues, but not optimally
helping is not the same as harming, and so the justification has shifted.
(Labeling the outcome of optimally helping as a human right and a deficit from
that right a harm equivocates on the standard meaning of harm.) There may well
be good reasons for an account of international justice to consider the interests of
those affected by current property right protections more carefully than those

6
Patent holders on antiretroviral drugs led a fight, until recently, to restrict access to generic
versions of their drugs. The consequence was a direct harm to those who might have benefited
from antiretrovirals and died instead. Still, the emergence of these generics that do save other lives
would not have happened had there not been the incentives created by the existing patent
systemor so the dominant view about intellectual property maintains.
116 N. Daniels

agreements now dobut that takes us into more contested terrain than the mini-
malist strategy.
International harming is complex in several ways. The harms are often not delib-
erately imposed, and sometimes benefits were arguably intended. The harms are
often mixed with benefits. In any case, great care must be taken to describe the
baseline against which harm is measured. Such a complex story about motivations,
intentions, and effects might seem to weaken the straightforward appeal of the
minimalist strategy, but the complexity does not undermine the view that we have
obligations of justice to avoid harming health.

Where Do International Health Inequalities Come From?

Pogge (2005a) emphasizes the fact that 18 million premature, preventable deaths
are associated with global poverty. It is tempting, then, to infer that country wealth
determines population health and that if rich countries help to keep poor countries
poor, they thus harm the health of those populations. If this inference is sound, it
gives the minimalist strategy considerable power in addressing international health
inequalities. Unfortunately, the inference is not sound, since the relationship
between country wealth and country health is more complex than the inference
presupposes. We need to examine the sources of international health inequalities
more systematically.
We can divide the sources of international health inequalities7 into three categories:
1. Those that result from domestic injustice in the distribution of the socially con-
trollable factors determining population health and its distribution. Included here
would be inequalities by race, caste, ethnicity, religion, gender, or geography in
the distribution of the determinants of health. Also included are failure to fund
adequately (relative to capacity) the health sector, including intersectoral public
health measures, immunizations, and comprehensive community-based primary
care; and misallocation of resources, for example, diverting funds from public
health and primary care to hospital care serving best-off groups in response to
their demand and greater political power.
2. Those that result from international inequalities in other conditions that affect
health. These include inequalities in natural conditions, such as poor natural
resources, including scarcity of arable land; or susceptibility to droughts and
floods; or disease vectors, such as mosquitoes carrying malaria or dengue. They
also include socially produced inequalities, such as significant inequalities in
capital, in human capital, and in political culture.

7
Not all international health inequalities plausibly raise questions about injustice, just as not all
domestic inequalities between groups raise those questions. For example, religious or ethnic dif-
ferences in lifestyle (diet, sex, or social cohesiveness) might give rise domestically and interna-
tionally to health inequalities that we would not consider unjust.
International Health Inequalities and Global Justice 117

3. Those that result from international practicesinstitutions, rule-making bodies,

and treatiesthat harm the health of some countries. The harms can be direct,
as in the case of the brain drain of health workers, or more indirect, as in failures
to build worker health and safety protections into international trade agreements,
or through international loans or other means that may perpetuate poverty.
These sources of inequality are not exclusive. Some international practices (cate-
gory three) may help create the social inequalities in the second category that in
turn increase health inequalities; they may also make it more difficult for states to
distribute the determinants of health in a just way (category one). Some of the ine-
qualities in the second category may also contribute to the injustices of the first.
The minimalist strategy would have great scope if category three sources domi-
nated categories one and two, but this seems unlikely. Only more robust accounts
of international justice can address the broader sources of inequality.
To see why the kinds of inequalities referred to in the second category cannot
exhaust the problem of international inequalities in health, consider how much
health inequality across countries is simply the result of wealth inequalities. Even
if we do not believe that all international inequalities in wealth are unjust, we might
believe some are, and if wealth inequalities then cause health inequalities, we
would have reason to judge the resulting health inequality unjust in at least some
cases. Indeed, if wealthy countries harm poor ones by sustaining their poverty
through various international practices, and if poverty clearly causes poor national
health outcomes, then the minimalist strategy may cover a significant part of the
terrain of health inequality. Indeed, the wealth of a country has an effect on aggre-
gate measures of health, at least up to some fairly moderate level of aggregate
wealth, say $68,000 gross domestic product per capita (GDPPC). Above that
level, there is little influence of aggregate wealth on aggregate health. This may be
some evidence that international inequalities in wealth have some contribution to
international health inequalities, and to the extent that wealthy countries cause or
sustain that inequality, the minimalist strategy obtains a grip on the problem.
But even more striking than the fact that great wealth is not needed to secure
high levels of population health is the amount of variation in life expectancy both
above and below that middle-income figure. Some poor countries, with GDPPC
less than $3,000, such as Cuba, or the even poorer state of Kerala in southern India
(which has lower income per capita than the average in India), have health out-
comes rivaling those achieved in wealthy ones. Among the wealthiest countries,
there are also significant differences in life expectancy.
From these facts, we see that policy matters greatly: what is done with national
resources explains much of the wide variation across countries that are equally rich
or equally poor. Cuba invests great effort in public health, including ecologically
sound environmental policies, as well as in basic education. It invests heavily in
training health personnel (its doctor per population ratio is comparable to the
United States), and it sends doctors abroad to worse-off countries. Indeed, it does
so despite US economic and travel sanctions intended to undermine its government
by inflicting economic harm.
118 N. Daniels

Cubas success in health outcomes despite the harms imposed by the United
States does not show that other international practices play no causal role in
producing poor health outcomes elsewhere. But the Cuban example shows how
hard it is to specify the baseline against which harm is to be measured. The mini-
malist strategy supposes that international practices that make a country poorer
than it would otherwise have been would thereby make it less healthy than it would
otherwise be. But international practices may make a country poorer than it
would otherwise be, but determined public policy may nevertheless result in much
better health outcomes than is typical for countries with those levels of poverty. The
harm to health can be specified only by assuming that no good health policy is put
in placebut why that assumption holds when it does may have nothing to do with
the economic harm.
Kerala, like Cuba, also invests heavily in basic education, securing high literacy
rates even for poor women, as well as in public health and primary care. The posi-
tive treatment of women stands out as a contrast with practices in many other areas
of India and South Asia in general. In the case of Kerala, it is popularly believed
that the lack of gender bias in education and in reproductive and marriage rights is
the result of a left-wing state government, but the story is more complex. Kerala, in
contrast to the rest of India, had a history of matrilineal property transmission for
2,000 years. As a result, women could not be discounted as in many other states of
India. Its cultural tradition was a base on which a more egalitarian social policy
could take root. Given a culture in which women retain significant autonomy and
power, both within and outside the home, more egalitarian education and control
over reproduction are realistic social goals, and both contribute significantly to
population health. Though Kerala, unlike Cuba, was not the victim of focused
antagonism, its superior health outcomes were achieved despite a long period of
slow economic growth. To the extent that the slow growth resulted from a lack of
foreign investment prompted by fears of its left-wing government, we have an even
stronger counterexample to the assumption that externally caused economic harm
produces lower health outcomes.
Domestic social policy and social history matter in wealthy countries also. Many
industrialized countries have better aggregate health outcomes than the United
States, despite the 50% higher US health care spending than nearly any other country.
To a significant degree, the better outcomes result from health-promoting policies:
universal health care coverage, more robust protections against poverty and unem-
ployment, better child care, more leisure, and better enforcement of workplace
health and safety. Some of the outcome difference is a result of much more diverse
US population, both ethnically (and racially) and geographically. The social
inequalities that are often associated with such diversity contribute to the lower
aggregate health outcomes in the United States, though it would be hard to quantify
just how much. Better policy, as in the other industrialized countries, might mitigate
these effects, but again, we cannot say how much.
One key factor contributing to poorer US health outcomes than other wealthy
countries is the history of US racism, legally supported in the American South until
40 years ago. Racism played an important role in dividing the working classes so
International Health Inequalities and Global Justice 119

they could not pursue common interests, as workers movements did politically in
Europe. This background not only partly explains the absence of more egalitarian
and health-promoting public policies, but it also explains some of the ongoing
inequalities that better policies might not by themselves be able to eliminate
(Kawachi et al. 2005). Even in a wealthy country, then, cultural practices that
produce health inequalities both inside and outside the health system contribute to
international health inequalities. One reason the United States performs less well
on standard aggregate measures of health than most other industrialized countries
is its homegrown production of race (and class) health disparities.
Gender bias in other regions contributes to international health inequalities the
way racism has in the United States. We can attribute much of the higher prevalence
of HIV/AIDS among young women and girls in sub-Saharan Africa to the health
impact of cultural and legal policies that disempower women. The example of race
in the United States and gender inequality in Africa and Asia illustrate one reason
that category two and category three sources of health inequality cannot cover the
terrain of international health inequalities. These domestic practices arise inde-
pendently of the level of country wealth and of international agreements, institutions,
or practices that may in other ways contribute to health inequalities.
Of course, racism and gender bias do not exhaust the ways in which domestic
injustice can contribute to international health inequalities. Internal demands on
relatively scarce resources by politically and economically more powerful, better-
off groups may distort policy in ways that leave worse-off groups more vulnerable
to health risks and less able to access remedies for those risks. Wealthy landowners
and industrialists may have so much political power that they can resist efforts to
tax them, leading to underfunded public health systems. Domestic injustice in the
distribution of the determinants of health contributes significantly to international
inequalities in health, and it is unlikely that we can explain away all domestic
responsibility for the injustice by pointing to the additional contributions of some
international practices.
In short, good health policy in even poor countries can yield excellent population
health, and poor health policy even in wealthy countries, like the United States,
can produce worse-than-expected performance. Together these observations count
as some evidence in favor of a point that many agree on regardless of other
disagreements about international obligations: Primary responsibility for meeting
rights to health and health care in a population should rest with each state. The fact
that some poor states can and do produce excellent population health makes this
point dramatically.8

8
In The Law of Peoples, Rawls (1999) makes the claim that international inequality in wealth or
income is quite compatible with well-ordered societies producing justice for their populations. He
argues that if two well-ordered societies make different decisions about population policy, with
the result that one becomes wealthier than the other over time, then the wealthier one should not
have to make transfers to the other in accordance with some international difference principle
aimed at making the worst off as well off as possible. Arguably, an analogous point holds for
health policy and health inequalities.
120 N. Daniels

Even if primary responsibility for population health rests with each state, that
does not mean the state has sole responsibility. Where we can explain why states
cannot do as well as others because of being harmed by international practices, the
minimalist strategy applies. Where other international inequalities are important,
but they cannot be attributed to international practices, there may still be room for
other considerations of global justice.
Do international health inequalities that clearly result from domestic injustice
constitute international injustice? Are other states or individuals in them obliged to
try to reduce them as a matter of justice? For example, if the US population does
worse than Norways solely because of American domestic injustice, not attributable
to category two or three sources, does that mean there is no issue for international
justice? That conclusion would seem to ignore the fact that victims of domestic
injustice are still victims of injusticeat a disadvantage through no fault of their
own. Does the obligation to improve their lot fall only on the local state?
What about international health inequalities that clearly result from category two
international inequalities and are not the result of category three practices? Suppose,
for example, that country A is wealthier and healthier than country B. Nevertheless,
B is well governed and arguably progressively realizes a right to health for its
population as best it can within its resource limits. Perhaps this captures the diff-
erence between Norway or Japan and Cuba or Kerala (imagine Kerala is a country
of 30 million people, not an Indian state). Is the resulting international health
inequality unjust?
Because there are significant international health inequalities that are not plausi-
bly addressed by the minimalist strategy, we must take on more robust approaches
to international justice if we think they are unjust, or we must concede that these
inequalities are not, after all, matters of justice.

The New Terrain of Global Justice: Where the Action Is

Global justice is a hotly disputed area of philosophical work, in part because it is

so new. Not only are the complex economic and social forces underlying globali-
zation themselves fairly recent developments, but the international agreements,
institutions, and rule-making bodies that regulate those forces are just emerging
and evolving, forming a moving target for our understanding. Their powers and
effects are newly grasped and felt, and moral understanding of their consequences
and their potential is in its infancy. Working out what international justice means
for these international institutions, including what it means for global health, is the
crucial task facing political philosophy and international politics in the next
generation. The process will involve working back and forth between judgments,
based on arguments and evidence, about what is just in particular practices or
decisions of the operation of international agencies or rule-makers and more theo-
retical considerations. We need time for reflective equilibrium to do its work. To
motivate exploring this intermediary ground, we need good reason to resist the
International Health Inequalities and Global Justice 121

pulls of both the cosmopolitan views and the strongly statist views that form the
poles of the current debate.

Resisting the Pull of the Cosmopolitan Intuition

Earlier, I invoked the powerful intuition that the vast gulf in life prospects
between the Angolan child and the Norwegian one is not just unfortunate but
unfair. Many people think such dramatic health inequalities are unjust when
they occur between the rich and the poor or between ethnic or racial groups
within a country because morally arbitrary contingencies, such as the luck of
being born into one group rather than another, should not determine life pros-
pects in such a fundamental way. The same contingency, however, applies to
being born Angolan rather than Norwegian, and it seems no less morally arbi-
trary and troubling. By abstracting from all relations that might hold among
people, including the institutions through which they interact and can make
claims on each other, the intuition seems to support egalitarian forms of
cosmopolitanism.
The support the egalitarian intuition appears to give to cosmopolitanism
derives in part from theoretical considerations that carry weight in many ethical
theories, including nonegalitarian ones. A feature of many ethical theories is that
persons or moral agents deserve equal respect or concern regardless of certain
contingent differences between them. Equal concern or respect is, of course, a
notion that is interpreted quite differently by utilitarians, who count each person
equally as a locus of welfare even if they do not assure equal outcomes for each
person, and many egalitarians, who want some kind of equality of opportunity
or outcomes. Whatever the differences in the content of equal respect, there is
considerable theoretical agreement on what counts as the contingent or morally
arbitrary differences that equal respect must ignore: mere physical distance, the
color of skin, religion, gender, and ethnicity. Nationality seems to be part of the
same family. The egalitarian intuition about the Angolan and Norwegian chil-
dren thus draws power from the broader theoretical agreement about what gener-
ally counts as a mere contingency and therefore a morally arbitrary difference
between moral agents.
The agreement about what counts as contingency and morally arbitrary differ-
ence, however, slides past a significant point of controversy. If we think of nationality
as one among many traits an individual may have, it seems no less contingent than
other troublesome ones, like race. In the relevant sense of could, we could have
been born into one race or another, one nationality or another. But, if we think of
nationality as a set of relationships in which one stands to others, and if we think
that being in certain political relationships with others, including interacting
through certain kinds of institutions, has moral import, then being a member of one
nation rather than another may be a less morally arbitrary fact than it first seemed.
Of course, showing that this political relationship has important moral implications,
122 N. Daniels

for example, for considerations of distributive justice, requires an argument,

especially in light of the power of the view that ethical considerations apply to
individuals in abstraction from these relationships. Indeed, the political view may
seem plausible only in light of a theory that helps explain why this political rela-
tionship, or a range of other kinds of relationships, is so important. It would beg the
question against a relational view, such as Rawls (1971, 1995), simply to affirm the
intuition we have been discussing.
One of the strengths of a relational view such as Rawls is that an account of the
requirements of justice will have to include an explanation of how institutions that
are just can remain stable and sustain commitment to them over time. Justice must
be in this sense feasible. Indeed, principles of justice are not acceptable as such if
conformance with them in a societys basic structure does not over time lead to a
stable or feasible social arrangement. Strains of commitment, for example, must be
tolerable, that is, less demanding than for alternatives.
By abstracting justice from any account of the institutions that can deliver
just outcomes in a sustainable way, the cosmopolitan view risks falling into
hand-wringing. It can lament injustice, but it has failed to set itself the task of
showing that justice is a stable product of institutions structured in certain
ways. Making justice a set of outcomes among individuals, abstracted from the
institutional structure through which individuals cooperate, is utopian in a
strong sense: we have no real description of what can produce it. Although the
cosmopolitan may admit that institutions and political relationships are instru-
mentally important in achieving what justice requires in the treatment of
individuals, just outcomes are specifiable independently of those institutions
and relations. The basic structure of a nation-state, on this view, may be instru-
mentally necessary for achieving domestic justice, just as a global state may
be instrumentally necessary for global justice. At any level, the institutions may be
viewed as unjust if they fail to yield just outcomes for individuals. But cosmo-
politan theory by design says nothing informative about how a commitment to
justice can be sustained by any of these institutions. Nor does it allow for any
variation in the concerns of justice that might be appropriate to institutions of
different types.
Though none of these points constitutes a refutation of cosmopolitanism, they
may move us to resist its pull and to consider seriously a relational view of
justice. We then face the prospect of a pluralist world. Justice may be one thing
for people who stand in the relations defined by nation-state and maybe another
for those who are members of different states and interact through other kinds of
institutions globally.9 Principles of justice that govern nation-states might then
differ from those that govern intermediary institutions among such states, and
both may differ from what considerations of fairness might mean among individuals

9
Michael Blake (2002), for example, argues that liberal egalitarianism within nation-states raises
questions about relative inequality, whereas global justice permits only considerations of absolute
inequality.
International Health Inequalities and Global Justice 123

in yet other associations. Justice, on this relational view, is a multilayered con-

struction. Though we have well-developed relational accounts of justice for
members of the same state (Rawls 1971, 1995), we have barely begun the process
of thinking about what justice means or requires for international institutions and
rule-making bodies.

Resisting Strongly Statist Versions of Relational Justice

An important obstacle to exploring this international space comes from one version
of a relational theory of justice, a strongly statist alternative to cosmopolitanism.
Nagel (2005), stimulated by Rawls (1999) articulation of what a liberal states
foreign policy ought to include, argues that socioeconomic justice, with its concerns
about equality of opportunity and economic inequality, requires that people stand
in the specific relationship to each other as defined by a nation-state. Within such a
state, socioeconomic justice has application because the terms of fair cooperation
must be justifiable, that is acceptable, to all, since all citizens are at once subject to
coercion and a party to laws made in their name. Outside the state, there is a moral
order, but it is limited to more fundamental humanitarian obligations to assist those
facing grave risks and having urgent needs; it must also not violate some funda-
mental human rights, and we must keep our agreements. We do not, however, have
obligations of justice to distribute health fairly, or to protect equality of opportunity,
or to assist other societies to become as well off as they can be with regard to the
satisfaction of rights to health or education or political participation.
Why is it only within a state that we are obliged to mitigate or eliminate morally
arbitrary inequalities and pursue social and economic justice? For Rawls, Nagel
says, What is objectionable is that we should be fellow participants in a collective
enterprise of coercively imposed legal and political institutions that generates such
arbitrary inequalities (Nagel 2005, 128). We can ignore extra-societal inequalities
but not intra-societal ones, despite the fact that both have great impact on peoples
lives, because there is a special involvement of agency or the will that is inseparable
from membership in a political society (Nagel 2005, 128) and so cannot arise
internationally. This will is essential to the dual role each member plays both as
one of societys subjects and as one of those in whose name its authority is exer-
cised (Nagel 2005, 128).
As subjects of a state, individuals are exposed to coercively imposed rules, in
contrast to the constraints imposed by voluntary cooperative enterprises for mutual
advantage. The coercively imposed rules are imposed in the name of all citizens,
who are putatively the authors of the rules. Consequently, they must take responsi-
bility as authors and insist on the justifiability of the rules to all involved. In this
context the concern for arbitrary inequalities becomes a matter for all to address.
In contrast, Nagel argues, international institutions and rule-making bodies, such
as the World Trade Organization (WTO), the World Health Organization (WHO),
the World Bank (WB), or the International Monetary Fund (IMF), do not directly
124 N. Daniels

coerce individuals, as states do, nor do they make rules directly in the name of
individuals. Where international rules or agreements are made, as in establishing
the North American Free Trade Agreement (NAFTA), they are the result of volun-
tary agreements or bargains made by states and are not made in the name of citizens
of those states. Since these two features are missing, Nagel concludes, the kind of
engagement of the will that holds for citizens of states is missing from international
institutions. Consequently, the condition that necessitates a justification of inequali-
ties and a mitigation of morally arbitrary inequalities is missing. More specifically,
whereas (to use his examples) Nagels relation to the New Yorker who irons his
shirts is a contract mediated by a complex configuration of laws defining contracts
and property rights that forms a system of social justice, trade agreements within
the Americas that establish his relations with the Brazilian who grows his coffee
constitute much thinner agreements or pure contracts that pursue mutual self-
interest at the state level. They contain no assurance that background conditions of
justice are met and give rise to no obligations to make such assurances.
Nagel rejects the idea that we might work out a sliding scale of obligations
that falls in between state-mediated justice and the cosmopolitan view, that is,
in the space in which I am proposing we work out our obligations. He simply
asserts that a sliding standard of obligation is considerably less plausible than
either the cosmopolitan or the political standard (Nagel 2005:142). Since
these international institutions do not act in the name of all the individuals
concerned, and are sustained by those individuals only through the agency of their
respective governments or branches of those governments, they are missing the
characteristic [the engaged will] in virtue of which they create obligations of justice
and presumptions in favor of equal consideration for all those individuals. Nagels
plausibility claim is question begging because it merely asserts that the statist and
cosmopolitan views exhaust the plausible alternatives.
We should resist Nagels strong statism for two reasons. First, some interna-
tional institutions impose conditions in a manner that is coercive and that arguably
involves the wills of those in the participant states. Second, some obligations of
justice may arise in institutions that are not coercive. Cohen and Sable (2005, 29)
address the first reason by noting that when the WTO sets certain standards, there
is no way for citizens of a country to opt out of their application.
Opting out is not a real option (the WTO is a take it or leave it arrangement, without even
the formal option of picking and choosing the parts to comply with), and given that it is
notand that everyone knows that it is notthere is a direct rule-making relationship
between the global bodies and the citizens of different states.

In effect, there is coercive application of rules, albeit by agencies not directly

elected by the various citizenries. This mediated agency, however, is common
within complex states and still involves rules made in the name of the citizens.
There is further evidence of the involvement of wills of citizens in various cases
where there is disagreement with the rulings of an international body. For example,
protestors, both individuals and organizations, including official international
workers organizations, have demonstrated against some free trade agreements that
were signed onto by their own nations. The protest is against the rule-making body,
International Health Inequalities and Global Justice 125

not primarily their own governments for endorsing them. They argue that they
resent being implicated, even through the agency of their governments, in a policy
they disagree with, such as the failure to impose appropriate labor health and safety
considerations or environmental considerations into trade agreements. In effect,
these protestors of the WTO and other associations and agreements believe there is
a need to justify the terms of the agreements to all affected by them. Similarly,
many Americans are embarrassed that the George W. Bush administration has
refused to be part of the World Court, has walked away from international treaties
to address global warming, and has tried to exempt itself from the Geneva
Conventions regarding the treatment of prisoners of war. They think the interna-
tional agreements impose obligations appropriately in their name, whereas their
Presidents unilateralism shamefully rejects what they want to uphold.
Consequently, even if Nagel is right about the characteristic by virtue of which
egalitarian considerations arise within states, that is, the dual role of citizen as both
subject and author of coercive rules and thus the engagement of citizens wills, he
is arguably wrong about the scope of institutions within which we may find func-
tionally equivalent conditions that have the same moral import. We find examples
that include coercion and that arguably engage the wills of citizensenough to
make them advocate, protest, and appeal to these organizations to consider their
claims. Even if Nagel is right about what makes this dual role morally relevant, then
some egalitarian concerns may still be appropriate even outside the state.
We may also resist Nagels strong statist position because obligations of justice
can arise in international institutions even if they are not coercive and do not engage
the will of citizens as subjects and authors in the way Nagel says is necessary.
Cohen and Sable (2006) argue that considerations about inclusion, falling short of
fully equal concern or egalitarianism but still within the domain of justice, arise
within a range of international institutions. Concerns about inclusion have implica-
tions for governance. If worker organizations were suddenly excluded from
participation in the International Labor Organization (ILO), that would be seen to
violate important concerns about inclusion (Cohen and Sabel 2006). Similarly, if a
policy enables better-off groups or states to advance their interests and leaves
worst-off groups with little or no benefits, and if significantly better benefits could
be gained by the worst-off groups at little sacrifice by others, then there has been
inadequate inclusion of the interests of all in the deliberations of the institution
(Cohen and Sabel 2006). Nagel is then wrong to insist that only humanitarian con-
cerns apply internationally.

Illustrations of Obligations of Justice in International

Organizations

Cohen and Sabel (2006, 153) sketch three types of international relationships that
might give rise to obligations of justice going beyond humanitarian concerns, inter-
national agencies charged with distributing a specific good, cooperative schemes,
126 N. Daniels

and some kinds of interdependency. Each may give rise to obligations of justice,
such as concerns about inclusion. These may range from an obligation to give more
weight to the interests of those who are worse off if it can be done at little cost to
others, to obligations of equal concern, perhaps yielding far more egalitarian obli-
gations. I shall illustrate each of these relationships and the obligations they give
rise to with examples focused on key issues of global health.
The WHO plausibly illustrates the idea that institutions charged with distributing
a particular, important good, such as public health expertise and technology, must
show equal concern in the distribution of that good. The organization would be
charged with being unfair if it ignored the health of some and attended more to the
health of others. For example, this point about showing equal concern arises in
other debates about the methodologies WHO employs. Cost-effectiveness analysis
(CEA), which WHO uses in suggesting interventions appropriate for resource-poor
settings, ignores issues of equity in the distribution of health and health care. These
criticisms of CEA thus challenge the unconstrained use of CEA by the WHO
whether it is using the methodology to determine health policy within a specific
country or across countries. WHO is constrained by its mission of improving world
health to consider equity in distribution in all contexts in which it workswithin
and across countries.
Concerns about equity show up in WHOs programmatic discussions as well.
WHO paid attention to equity in the distribution of ARTs for HIV/AIDS (Daniels
2005). WHO also sponsors a Commission on the Social Determinants of Health
that has a strong focus on equity in health. Both these examples illustrate behavior
compatible with, and required by, the institutional charge to WHO. Either this is a
misguided focus of energy for WHO, as seems to be implied by Nagels strong sta-
tist view, or it is an implication of the obligation of justice to show equal concern
that arises within institutions charged with delivering an important goodwhether
they operate within states or across them.
Consider now the international bodies that establish rules governing intellectual
property rights, including those that are key to creating temporary monopolies over
new drugs. Such a scheme is consequential in that it increases the level of coop-
eration among affected parties in the production of an important collective good,
research and development of drugs, and it does so in a way that has normatively
relevant consequences (Cohen and Sabel 2006, 153, n.12). Suppose we conclude
that this mutually cooperative scheme generates considerations of equal concern, or
at least that it must be governed by a principle of inclusion.
We might then view quite favorably Pogges (2005a) suggestion about structuring
drug development incentives so that they better address the global burden of
disease. Earlier, I said Pogges proposal could not be defended on the minimalist
grounds that it avoided doing harm because of the problem of specifying the relevant
human rights baseline. Now, however, we have a new basis on which to defend the
justice of Pogge-style incentives. Such an incentive scheme, supplementing existing
property rights or modifying them appropriately, would greatly enhance the benefits
to those who are largely excluded from benefit for a significant period of time, and
it would do so at only modest cost to those profiting from the endeavor. Minimally,
International Health Inequalities and Global Justice 127

it illustrates what a more inclusive policy should include; one can build into it even
stronger egalitarian considerations, if the cooperative scheme gives rise to concerns
about equality and not simply inclusion. Exactly what form the policy would take,
or the justification for it deriving from the form of cooperative scheme involved,
remains a task for further work. With these issues worked out, we might then support
Pogges incentive schemes as a way of moving some countries closer to satisfaction
of a right to health, connecting the effort to human rights goals as he does.
Consider again the example of the brain drain of health personnel from low-
and middle-income countries to wealthier ones. Nagel (2005, 130) notes that
nations generally have immunity from the need to justify to outsiders the limits
on access to its territory, though this immunity is not absolute, since the human
rights of asylum seekers act as a constraint. Still, the decisions different countries
make about training of health personnel and about access to their territories have
great mutual impact on them. There is an important interdependency affecting
their well-being, specifically, the health of the populations contributing and
receiving health personnel. The British decision in 2000 to recruit 30,000 new
nurses from developing countries rather than try to train more greatly affected the
fate of people being served by health systems in southern Africa. I noted earlier
that the underfunding of salaries for African nurses and doctors, in part a legacy
of Structural Reform Programs imposed by the IMF and World Bank, but clearly
continued by local governments, helps create the push factor driving these
workers abroad.
Arguably, this relation of interdependence brings into play obligations of inclu-
sion, perhaps those of equal concern, going beyond in any event humanitarian
considerations. In addition to Pogges no harm or minimalist approach, we thus
have available obligations of inclusion requiring us to consider the interests of all
those in the interdependent relationship. These obligations can be translated into
various policy options that address the brain drain: it may be necessary to restrict
the terms of employment in receiving countries of health workers from vulnerable
countries; it may be necessary to seek compensation for lost training costs of these
workers; it may be important to contribute aid to contributing countries aimed at
reducing the push factors; it may be necessary to prohibit active recruitment from
vulnerable countries.
We might combine these relationships of interdependence with the relationships
and obligations that arise from cooperative schemes. The International Organization
for Migration, established in 1951 to help resettle displaced persons from World
War II, now has 112 member states and 23 observer states. It manages various
aspects of migration, providing information and technical advice, and arguably
goes beyond its initial humanitarian mission. Suppose it took on the task of devel-
oping a policy that helped to coordinate or manage the frightening health personnel
brain drain.
Minimally, it might seek internationally acceptable standards for managing the
flowstandards on recruitment, on compensation, and on terms of work. More
ambitiously, it might seek actual treaties that balanced rights to migrate with costs
to the contributing countries, countering at least some of the pull factors and even
128 N. Daniels

providing funds that might alleviate some of the push factors underlying the brain
drain. In seeking these, it might work together with the ILO, the WTO, the WHO,
and the UN. Such a cooperative endeavor would reflect the common interest in all
countries of having adequate health personneland thus being able to assure citi-
zens a right to health and health careas well as the common interest in protecting
human rights to dignified migration.

Conclusion

Earlier I posed the question: When are international inequalities in health unjust?
This discussion falls short of providing an answer because we remain unclear just
what kinds of obligations states and international institutions and rule-making
bodies have regarding health inequalities across countries. To arrive at a real
answer, we must carry out the task of explaining the substance of international
obligations for the various kinds of cooperative schemes, international agencies,
and international rule-making bodies in order to specify when the internationally
socially controllable factors affecting health are justly distributed and regulated.

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Poverty, Human Rights, and Just Distribution

John-Stewart Gordon

Abstract Poverty is a serious threat for human beings and their well-being. People
are simply unable to live a good life when they are faced with severe problems,
e.g., bad education, poor housing, poor sanitation, poor hygiene, or malnourishment.
However, one of the most urgent problems with regard to poverty is bad access
to primary health care and the allocation of health care resources for millions of
people around the world. These people are deprived of human flourishing, and life
is for them, in general, solitary, poor, nasty, brutish, and short. In this chapter,
I present an ethical argument that shows that people have a moral right to primary
health care, and that wealthy developed countries are morally obligated to help the
needy. Primary health care, and hence access to it is, as I will argue, a global public
good that is protected by human dignity and the human right of protection from
unwarranted bodily harm.

Keywords Equality, global public good, human rights, justice, poverty, primary
health care, public health

Introduction

Aristotle is right in saying that all people strive by nature for human flourishing
(Nicomachean Ethics I, 1). But, it should be clear, that this most important human
aim has to be promoted by adequate material means. What about extremely poor
people? Although poor people normally try their best to face up to the problems of
their poverty, they have lesser opportunities to live a good life, to strive for human
flourishing, and thus to gain well-being. Poverty is not only due to individual socio-
economic status, this claim would be premature, instead, it isto a great extent
due to social structure, which shapes the lives and life chances of individuals
(Graham 2004, 299). The consequences are bad education, poor housing, poor
sanitation, poor hygiene, and malnourishment to name just a few. That is, the living
standard of the very poor is all in all very low (i.e. bad quality of life) and, thereby,

M. Boylan (ed.) International Public Health Policy and Ethics, 131

Springer Science + Business Media B.V. 2008
132 J.-S. Gordon

they are deprived of human flourishing.1 One of the most important strategies in
international public health policy is to counter this situation, first, by improving the
health of the poor by providing better access to primary health care and better
allocation of health care resources, and second, by promoting equality and equity
(WHO 1998).
Sen (2004) rightly maintains that investment in welfare, education, and health
successfully ensures development in its broadest sense, which requires the removal
of impediments to peoples capability. But, as a matter of fact, he is one of only few
authors who present an ethical argument, in order to give a justification for improving
the health of the poor. Most people emphasize that ill-health is a serious obstacle to
economic progress, which isof coursetrue, but their main argument rests solely
on the point that investing in the health of the poor brings improvement in produc-
tivity and has enormous wealth-creating potential (economic argument). Leon and
Walt think that these sorts of utilitarian/human capital arguments need to be kept
in perspective, and should not overshadow the ethical imperative concerning
inequalities in health (Leon and Walt 2004, 6), which is certainly true.
In this chapter, I shall present an ethical argument that shows that people have a
moral right to primary health care, and that the wealthy developed countries, which
are able to help the poor, are morally obligated to do so. Of course, also in Western
developed countries problems occur in ensuring full access to primary health care
for the poor (e.g., USA) but, in this chapter, I would like to focus on the poor of
non-Western developing countries such as those of sub-Saharan Africa, developing
countries in East Asia, or in South America. Many people may think that their own
community has a strong duty to help its citizens and provide them with adequate
health care, but that their community is less obligated to help direct neighbors, and is
morally not at all obligated to help people who live far away and suffer from
inequitable access to primary health care. In this chapter, I will not go any deeper
into special details of international public health and present analyses of different
health care systems within a given country or across different countries, or try to
draw conclusions with regard to, e.g., the relationship between life expectancy and
the quality of life in different countries; instead, I will face the demands of cultural
relativism, which is a great obstacle for claiming that human beings have a moral
duty to provide other human beings with adequate access to primary health care,
and which is a global public good. In doing so, I hope to provide other researchers,
policymakers, and politicians who are engaged in international public health policy
with an ethical argument that could be used as a tool to convince other people to
help improve the health of the poor and so promote equity.
In the first part, I will analyze the notion of ethical relativism in order to counter
the stance of the moral relativist who denies the existence of a moral right to
provide other people with adequate access to primary health care. The second part

1
[I]t is abundantly clear that a large proportion of the worlds population does not have access to
anything approaching an adequate level and standard of health care provision, and is denied treat-
ments and medical care that are of undoubted efficacy (Leon and Walt 2004, 7).
Poverty, Human Rights, and Just Distribution 133

contains the ethical argument for a just distribution of health care resources by
using the concept of human rights in arguing for the claim that primary health care
is a global public good. The third part provides a brief discussion of four objections
to the ethical argument. The last part ends with some closing remarks.

Ethical Relativism and International Public Health Policy

Why is ethical relativism a serious threat for international public health policy?
Before I answer this question, I would like to say something more on the notion of
ethical relativism. There is a long ongoing philosophical debate on the question
what is and how to deal with the demands of ethical relativism. The notion of ethical
relativism is due to three different parts of basic ethics: empirical ethics, metaethics,
and normative ethics. The meaning of the notion of ethical relativism varies from
part to part and from ethical stance to ethical stance. Hence, I will give a short
description of my use of the notion in question.
Empirical ethics: ethical relativism respectively descriptive relativism (some-
times called cultural relativism) means that beliefs or standards about moral
issues are relative to different individuals and different societies: that is, different
individuals and different societies accept different moral beliefs or standards and
thus disagree about the answers to moral questions (Carson and Moser 2001, 1).
Metaethics: ethical relativism has, at least, two noteworthy versions: (i) extreme
metaethical relativism, and (ii) moderate metaethical relativism. According to the
first stance, proponents hold the view that all moral judgments are neither objec-
tively true nor false. According to the second stance, proponents hold the view that
(a) some moral judgments are objectively true or false, and (b) some moral judgments
are not objectively true or false. That is, there are just a few correct or objectively
true answers to certain moral questions, on the one hand, but not regarding most
moral questions, on the other hand. Additionally, the second stance proponents take
it for granted that there are just a few moral questions which can be answered, while
they think that most of the moral questions cannot. Generally speaking, different
individuals or societies can hold conflicting moral judgments without any of them
being mistaken (Carson and Moser 2001, 2).
Normative ethics: ethical relativism respectively normative relativism states
that different basic moral requirements apply to (at least some) different moral
agents, or groups of agents, owing to different intentions, desires, or beliefs among
such agents or groups. The most common form of normative relativism seems to
be social normative relativism, which states that an action is morally obligatory for
a person if and only if that action is prescribed by the basic moral principles
accepted by that persons society (Carson and Moser 2001, 2).
The sophisticated moral relativist typically holds the view that (i) cultural
relativism, (ii) extreme metaethical relativism, and (iii) normative relativism are
true. In doing so, they deny any moral rights or obligations that are outside their
own community. That is, the demands of international public health policy to
134 J.-S. Gordon

help other people in foreign countrieswho suffer from poverty and who are in
need of being supplied with health care resources, etc.cannot convince the
moral relativist, because there is no commonly shared moral basis. But let us
take a closer look at this argument, which rests on two premises. The first
premise is a factual statement about the differences between moral codes, that
is, moral rules (moral codes) differ according to different communities. The
second premise is a value claim, that is, moral rules of a community are authori-
tative for this community, only, and this is good. The general conclusion is that
no community has a moral right to demand anything from other communities, no
matter what the reasons are.
The argument of the moral relativist is invalid. Why? The first premise rightly
states that moral rules differ according to different communities, but, as a matter
of fact, there are some universal moral rules which can be found in every sound
community, e.g., do not murder, do not insult other people, do not torture, do not
rape, do not steal, and help needy people. It seems to be that without a hard core
of universal moral rules a community is not able to survive long enough and to
promote human flourishing. However, it is wrong to say by virtue of empirical
evidence that all moral rules differ according to different communities. The notion
of moral rules has to be modified in the second premise with regard to the point
we mentioned previously (a hard core of universal moral rules exists). Even the
moral relativist, as Williams (1972) rightly points out, has to acknowledge the fact
that he himself makes a universal claim in stating that other communities should
respect his communitys conception of ethical relativism. Furthermore, the institu-
tion of slavery or racism, the burning of widows, child labor, the denial of wom-
ens right to vote, and sexism, etc., are social practices which could not be morally
evaluated if ethical relativism were true.2 But, as a matter of fact, it does make
sense to be able to say that practices of one time or place are more or less ethically
acceptable than those of another (Macklin 1995, 241). Of course, moral beliefs
and practices of other cultures and former times can be criticized and compared.
If not, we are not permitted to condemn the Nazi atrocities, Stalins Gulags, or
Amins regime in Uganda, a severe consequence that people normally are not will-
ing to accept. Below, I will present an argument to support the claim of why it is
possible to make moral claims on others. However, this short evaluation of the
premises shows that the conclusion of the moral relativist seems not to follow.
There are cases that may justify moral demands by virtue of the existence of
universal moral rules.3

2
This holds, normally, for moral evaluations from outside the community, but it is also possible,
of course, that within a given community disagreement may occur when beliefs about moral issues
are relative to different individuals or different groups, that is when (the body of) beliefs are not
only due to different communities.
3
Macklin states with much plausibility: If human rights is a meaningful concept, and if there are
any human rights, then normative ethical relativism must be false. Human rights are, by definition,
rights that belong to all people, wherever they may dwell and whatever may be the political system
or the cultural traditions of their country or region of the world (Macklin 1999, 243).
Poverty, Human Rights, and Just Distribution 135

Of course, one could say more on this issue, but, if I am right, the moral demands
of international public health policy on wealthy developed countries to help the
poor in foreign countries by improving the health of the poor and to promote equity
could hardly be defeated by the conception of ethical relativism. Ethical relativism
would be a serious threat to international public health policy, if it were a true
stance, because one would not be able to claim that otherespecially wealthy
developed countries are morally obligated to help the poor. According to this case,
it would be, then, solely up to the vagaries of the donors and their alms. The poor
people are not suppliants, but have a moral right to adequate access to primary
health care and to be treated with respect.4

Primary Health Care As a Global Public Good5

In this part, I shall argue, first, that primary health care is a global public good, and
hence it follows, second, that this good has to be fairly distributed among all people,
since global public goods are protected by human rights, which are universally valid.
What is a global public good? According to Kaul et al. (1999, 2), a global public
good has to meet two criteria: (i) that their benefits have strong qualities of publicness
(i.e. nonrivalry in consumption and nonexcludability)6 and (ii) that their benefits are
quasi-universal in terms of countries, people, and generations (i.e., humanity as a
whole should be the beneficiary of the global public goods). In other words: a global
public good provides all people in all places at all times with benefits and has a
great utility for the well-being of the people once it is produced. However, by virtue
of their criteria, public goods typically face supply problems, and so are often
referred to as a case of market failure as a result supply and demand cannot reach
an equilibrium, public goods are undersupplied and resource allocations are sub
optimal (Kaul et al. 1999, 6).

4
Of course, some people might object, Why should one be moral? (or Why should one help
other people?), but I strongly think that those peopleone may call them moral relativists
should not be regarded for a sound ethical discourse. Aristotleunlike Plato (1903; Politeia II)
rightly says in his ethical main writing, Nicomachean Ethics (EN I), that his teachings are for
those people who already care for the ethical life. My article is not about to convince extreme
moral relativists who are unwilling to engage in this line of thinking, it is about to promote the
ethical reasoning of people who are already serious about ethics and the central question of living
a good life.
5
In the following, I will use the notions health or primary health care as global public goods
more or less interchangeable, though at the same time I acknowledge the fact that there are, of
course, differences.
6
Nondivisibility (i.e. nonrivalry in consumption) refers to the ability of all people to benefit from
the public good once it is produced. Nonexcludability refers to the inability to exclude any
individual or group from the benefits of the public good once it is produced.
136 J.-S. Gordon

Most people see poverty as one of the most influential factors in poor access to
primary health care. Hence, Kaul et al. are right in stating, that, e.g., a poverty
alleviation program for sub-Saharan Africa could be a global public good if, by
meeting the needs of local populations, it were also to contribute to conflict prevention
and international peace, reduce environmental degradation of potentially interna-
tional consequences and improve global health conditions (Kaul et al. 1999, 12).
And, Chen et al. (1999, 292), with great emphasis: [T]he control of many global
diseases of the poor can be considered a public good. For example, the successful
eradication of smallpox, the near elimination of polio and the primary health care
movement are global efforts for the public good.
To me it seems obvious that primary health care is a global public good. But
what are the consequences? What is the very advantage of the idea that primary
health care is acknowledged as a global public good? If one is able to prove that
global public goods, especially the global public good of primary health care, stand
in a special relation to human rights, one may be able to provide an ethical
argument to support the claim, that all countries are morally obligated to improve
the worldwide access to primary health care, by virtue of the existence of human
rights.7 But, what is the content of the supposed human rights? The notion of
human rights is linked to the notion of human flourishing. To promote human flour-
ishing means to ensure certain kinds of important basic goods such as: (i) human
dignity; (ii) food, clothing, shelter; (iii) protection from unwarranted bodily harm,
etc. These basic elements represent the first generation of human rights. I see a strong
connection between the idea of human dignity and protection from unwarranted
bodily harm, on the one hand, and the problem of access to primary health care,
which is due to poverty and to the lack of interest8 by many responsible politicians, on
the other hand. If poverty is responsible for people not having access to primary
health care, which leads to unwarranted bodily harm, one should acknowledge
the fact that this is a human right violation, namely the violation of the human right
of protection from unwarranted bodily harm, which leads to the deprivation of
human dignity. And, if this is the case, all people and all nationsat least those in
the United Nations Charterare asked to improve this life-threatening situation for
millions of needy people by providing them with better access to primary health
care. Chen et al. (1999, 294) rightly maintain that

7
In this article, I am not able to give a justification for the existence of human rights, since this
would be far outside the focus of this chapter. Here, I take the existence of human rights and their
sound justificationfor the sake of argumentfor granted. Though, of course, I have to admit
that the justification of human rights is a very difficult task to deal with.
8
In Injuries, Inequalities, and Health: From Policy Vacuum to Policy Action, Anthony Zwi gives
two reasons why he thinks that there is a limited response to injuries in so many settings with
regard to international policy. His reasons also hold for the phenomenon of the lack of interest, he
maintains: One important reason is that the poor suffer most, but also have least influence over
policy decisions. As a result, there is limited public concern: it affects them, not us, and therefore
does not attract attention. Furthermore, the poor in most settings have limited political influence
and may have more difficulty engaging local policy-makers with their concerns
(Zwi 2004, 274).
Poverty, Human Rights, and Just Distribution 137

[t]he world-wide diffusion of information and normative convergence that preventable

human suffering should not be tolerated may increasingly move the public to perceive good
health universally shared as a basic human right. Good health is both an instrument as well
as an expression of global solidarity, reflecting ultimately the indivisibility of health.

But, what follows from taking the claim, that primary health care is a basic human
right (or could be justified by a basic human right), seriously?9 The answer to this
important question is the second issue, which concerns the just distributions of
primary health care resources, in order to provide the poor with an adequate access
to primary health care. The argument is: Human dignity is not a privilege that a few
people have, but is something which belongs to all human beings by nature (Gordon
2006, 191). But, what is human dignity? One has to admit, at first sight, that the
notion of human dignity is hopelessly opaque, but, at second glance, the notion
becomes clearer when one acknowledges the fact that human dignity is something
that makes out of human beings true human beingsthe essence of humanity.
Pufendorf (1672) shows in his system of natural law (De iure naturae et gentium
libri octo) that the very idea of the equality of human beings is due to the conception
of human dignity.10 People are morally equal; they have equal moral rights and
share equal moral obligations by virtue of their human dignity. But, as a matter of
fact, the primacy of strict equality is challenged in circumstances of distributions.
A just distribution is not always a distribution of equal shares. Aristotle is right in
stating that equals should get equal shares and unequals should get unequal shares;
all people, according to Aristotle, should be treated equally according to a special
standard (Aristotle EN V, 6). I thinkwith regard to the general idea of just distri-
butionsMichael Walzer is right in maintaining that nearly every sphere needs its
own standard of distribution. That is, a just distribution is not (always) a strict dis-
tribution of equal shares. But, unequal shares have always to be justified. And, if
no sound justification is in sight, the distribution is unjust and should be altered.
What about the questions of access to primary health care and of just distribution?
As we have already mentioned, primary health care is a global public good that
benefits all people. If a human right promotes this global public good, then all needy
people have a moral right to access to primary health care and to all morally acceptable
means by which it can be ensured that primary health care resources may be provided.
This means, in the end, that there is a strong moral obligation for those people (and
communities) who are able to help the poor by reducing their poverty, if poverty
alleviation is the main key to improving access to primary health care.

9
It may seem that I do not need the human rights argument to back up my main thesis, since the
argument of global public goods seems to be sufficient for a sound justification. So, why am I
presenting two independent arguments? It is my contention that both are parts of one major
sophisticated argument, and thus cannot not be reduced to one argument alone. One needs
the strengths of both parts in order to present a powerful argument, so as to justify that all people
should be provided with adequate access to primary health care, and to reduce their poverty.
10
This thoughtmediated by John Wisealso had a strong influence on the conception of the
American Declaration on Independence (1776) according to the idea of equality.
138 J.-S. Gordon

The poor of non-Western developing countries, such as sub-Saharan African

countries, developing countries in East Asia, or South America have a moral right
according to the idea of human dignity and this is justified by the conception of the
human right to be supplied with adequate health care resources. Lack of access to
primary health care is an unwarranted bodily harm, which should be improved by
all morally acceptable means.

Objections

First, one may object that the language of human dignity and human rights are too
opaque to justify any moral rights, such as providing the poor with adequate access
to primary health care, which obligate other people and foreign communities. There
are no justified moral rights that support the idea of distributing health care
resources equally.
Most people who use the language of human dignity and human rights relate
these notions to the very idea of absoluteness, which then makes it opaque. The
idea of absoluteness is originally due to the conception of a divine entity that
equipped human beings with a certain dignity. This dignity, in turn, justifies universal
human rights. But, as a matter of fact, the talk of divine entities, which function as
a sound justificationat least in most areas of philosophy has vanished into thin
air in favor of secular thought. In my view, there is no necessity to link the notions
of human dignity and human rights to the idea of absoluteness. I think that Rawls
idea of an original position seems to have enough power to justify the language
and thus the phenomenon of human dignity and human rights: All people agree
under the veil of ignorance in the original position to accept the idea of human
dignity and a hard core of human rights, e.g., to provide adequate access to primary
health care for everyone. According to this conception, there is no opaqueness in
sight, since it is solely up to the people who decide about the basic guiding principles
(here, the principle of beneficence), that ensure human well-being. Hence, it seems
to be plausible to say that all people should have adequate access to primary health
care, if they need it. And if they do not have any access, at all, they should be helped
by any morally acceptable means. That means, all people who have accepted the
contract made in the original position and who are able to improve access to
primary health care, are thus morally obligated to do so. Hence, they are morally
obligated to provide others with health care resources.
Second, it is unclear, whether the account holds that one should help people
because they are poor and thus do not have adequate access, or that one should help
people because they suffer from health inequalities as such?
The first point is that inadequate access to primary health care is per se unjust
regardless of someones individual socioeconomic statusthe people in question
may be wealthy or poor. The second point is that, normally, poor peopleespecially
most people in developing countriesface the problem of inadequate access, and
hence are vulnerable according to lack of important vaccines, basic medication, or
Poverty, Human Rights, and Just Distribution 139

exposure to severe diseases which in turn are due to bad sanitation. However,
poverty is a serious threat for international public health. If I am right in maintaining
that primary health care is a global public good and thus should be made accessible
to all people, one must do everything possible to ensure a just distribution of health
care resources because to deny this would be a violation of a basic human right
(protection of unwarranted bodily harm caused by life-threatening poverty). But,
who should pay the bill for it?
Third, who is responsible for providing all people who suffer from inadequate
access to primary health care with adequate resources? Who should pay for it?
Should all wealthy people pay, or all Western developed countries, or how should
one proceed? These are hard questions, but I will try to give a short outline of a
possible strategy.
Many developed and developing countries alike signed the Declaration of
Human Rights (United Nations Charter) in 1948 (and later on). All these countries
acknowledge the fact that human rights violationse.g., inadequate protection
from unwarranted bodily harmshould be prevented. If access to primary health
care is a global public good protected by a human right, then all participating
nations have a legaland moralduty to provide their members (as well as
nonmembers, by virtue of the universal idea of human rights, but this demand may
be restricted on the grounds of limited economic means) with adequate access to it.
The best way to manage this is, first, that all participating countries should pay a
special tax into a joint fund to help those countries (5% of the countrys income,
say) that are not able to provide their own citizens with adequate access to primary
health care. Second, all developing countries should be released from their debts in
order to spend this money on their citizens in order to provide them with adequate
health care resources. Third, all partaking countries should be forced to provide
their citizens with basic education, which is a main tool for poverty alleviation.
Fourth, poverty alleviation programs should be carried out. Fifth, all participating
countries should be forced to solve conflicts not by war, but by consensus. Sixth,
the participating countries should impose a special taxperhaps every five years
(5% of their citizens income, say)on those citizens who earn sufficient money
(i.e., who are not below the average income) and every year, according to business,
companies (3% of their income, say) to jointly fill the fund. Seventh, in addition to
normal public primary health care centers, special international primary health care
centers, financed jointly by the fund, should provide a broad net of access to
primary health care in all participating countries. These are the core elements of
providing better access to primary health care.
Fourth, it seems to be wrong from a libertarian viewpoint to make a redistribution
of very large sums of money, mainly from Western developed countries (e.g., USA)
to non-Western developing countries (e.g., sub-Saharan African countries), in order
to support people who live in poverty and suffer from bad access to primary health
care. They have no right to take my money, so that they can live a better life.
What about me and my rights?
The libertarian viewpoint may be true at a first and superficial glance, but on a
second more searching appraisal there are at least two striking reasons why this
140 J.-S. Gordon

viewpoint is fallacious. The first point is that it is not concerned with providing
people with secondary or tertiary luxury goods, it is about helping people to survive
in an unpromising situation, where the people are unable to help themselves. Most
of them would die without foreign help. What they need is to be provided with
basic goods. As we have seen, all people have a human right to live and to be
provided with adequate means of primary health care. Libertarians are right in
claiming that there are (respectively should be) strong property rights and that no
one should easily have the opportunity to redistribute ones means. But, if people
die solely by virtue of being extremely poor and without access to primary health
care, thenat leastthose countries who signed the United Nations Charter are
morally obligated to help the poor to survive and to provide them with adequate
means to restore their lives. The human right of protection from unwarranted
bodily harm trumps the libertarians right of absolute protection of ones property.
The dignity of men is unimpeachablebut property is not! The second point is due
to Aristotle who maintains in Nicomachean Ethics I that his teachings are only for
those people who are already advised in ethical reasoning. The libertarians views
on the above issues seem to reveal that they fall below a certain commonly shared
limit of ethical reasoning. Most people would not join a community of people who
only think about protecting their property and additionally share a total lack of
feeling for other people who had been adversely struck by the lottery of life. Luck
can turn and libertarians should better be prepared for this, though a just society
would not leave somebody behindnot even libertarians. And this leaving
somebody not behind is the crucial point of showing compassion and taking care
for one another in a globalized world of justice.

Conclusions

In this chapter, I have entirely focused on the question of why should one help the
poor from non-Western developing countries (e.g., sub-Saharan Africa) with regard
to the issue of adequate access to primary health care. Most people who suffer from
inadequate access to primary health care are very poor, or live in rural areas which
do not have any primary health care centers. These people are deprived of human
flourishing because the lack of adequate access to primary health care and basic
education lead to poor quality of life, with severe diseases and short life-expectancy
for the people. But, why should anyoneespecially the Western developed
countrieshelp these people? It is my contention that healthand hence adequate
access to primary health careis a global public good which is protected by human
dignity and the human right of protection from unwarranted bodily harm. At least,
those countries that signed the United Nations Charter have the moral duty to do
everything possible to provide all people with adequate access to primary health
care. Inadequate access to this global public good is a human rights violationthat
is, inadequate protection from unwarranted bodily harm. All participating nations
maintain that human dignity also requires that all people are understood to be morally
Poverty, Human Rights, and Just Distribution 141

equal. If this is the case, all people without access or inadequate access to primary
health care have a rights claim to this global public good by virtue of their moral
equality. Therefore, all participating countries in the Charter are morally obligated
to provide all people with adequate access to primary health care, which means that
just distributions should take place (e.g., through jointly funded provision and
special taxes). Access to adequate primary health care and basic education are
preconditions for living a good human life.

References

Aristotle. 1990. Ethica Nicomachea, ed. I. Bywater. Oxford: Oxford University Press.
Carson, T. L., and Moser, P. K. 2001. Introduction. In Moral Relativism: Species, Rationales,
and Problems, ed. T. L. Carson and P. K. Moser, 121. New York: Oxford University Press.
Chen, L. C., Evans, T. G., and Cash, R. A. 1999. Health as a global public good. In Global
Public Goods, ed. I. Kaul, I. Grunberg, and M. A. Stern, 284304. New York: Oxford
University Press.
Gordon, J.-S. 2006. Justice or equality? Journal for Business, Economics & Ethics 7 (2):
183201.
Graham, H. 2004. From science to policy: options for reducing health inequalities. In Poverty,
Inequality and Health, ed. D. Leon and G. Walt, 294311. New York: Oxford University
Press.
Kaul, I., Grunberg, I., and Stern, M. A. 1999. Defining global public goods. In Global Public
Goods, ed. I. Kaul, I. Grunberg, and M. A. Stern, 219. New York: Oxford University Press.
Leon, D., and Walt, G. 2004. Poverty, inequality, and health in international perspective:
a divided world? In Poverty, Inequality and Health. ed. D. Leon and G. Walt, 716. New York:
Oxford University Press.
Macklin, R. 1995. The Nazi doctors and the Nuremberg Code. In Universality of the Nuremberg
Code, ed. G. J. Annas and M. A. Grodin, 241256. New York: Oxford University Press.
Macklin, R. 1999. Against relativism. New York: Oxford University Press.
Plato. 1903. Platonis Opera, ed. J. Burnet. Oxford: Oxford University Press.
Pufendorf, S. 1672. The law of nature and nations eight books. De iure et naturae et gentium
libri octo. C. H. Oldfather, Vol. II. Oxford: Clarendon Press.
Sen, A. 2004. Economic progress and health. In Poverty, Inequality and Health, ed. D. Leon and
G. Walt, 333346. New York: Oxford University Press.
WHO. 1998. Health 21: Health for All in the 21st Century. Copenhagen: WHO Regional Office
for Europe.
Williams, B. 1972. Morality: An Introduction to Ethics. New York: Harper & Row.
Zwi, A. 2004. Injuries, inequalities, and health: from policy vacuum to policy action. In Poverty,
Inequality and Health, ed. D. Leon and G. Walt, 263282. New York: Oxford University
Press.
Why Should We Help the Poor? Philosophy
and Poverty

Christian Illies

Abstract One might question whether we need ethics at all in the debate on
global poverty, or whether the demand to help seems self-evident and the choice
of particular actions should be left to specialists on developmental aid. In this
chapter, it is argued that the answers are yes and no: No, because we can leave
particular recommendations to experts once we know precisely what we should
promotebut also yes, since we must know the exact end of our (demanded)
action. Empirical poverty-research without specified ends is blind; it requires the
prior identification and rational justification of particular ends. This, however, is
the task of ethics because no empirical science can lead to normative insights.
Since it is highly controversial whether philosophical reflection can provide such
a justification, a transcendental argument is outlined: if there is something good,
then it is good that the good is actively supported, and if a capability to do so is a
necessary requirement for this support, then it is also good that human beings have
this capability. Human freedom is the paramount capability to self-determine ones
life and actions. It is an essential condition for supporting the good. It follows that
a certain kind of freedom (namely the one necessary for supporting the good; here
called moral freedom) must be regarded as a necessary end for any morality. We
are obliged to help others so that they can help.
The chapter ends with showing in which way the end moral freedom tells us
why we should help the poor and can provide practical orientation for doing so.

Keywords Poverty, ethics, justification of ends, transcendental arguments, freedom,

capabilities, Sen

M. Boylan (ed.) International Public Health Policy and Ethics, 143

Springer Science + Business Media B.V. 2008
144 C. Illies

Poverty as a Philosophical and Practical Problem

In a world where almost 1 billion people (out of 6.55 billion) earn less than $1 per
day,1 and where everyday almost 16,000 children die from hunger-related
causes,2 it seems more than obvious that we should help the poor. We are the
1 billion people who live in the 57 countries of the developed or industrialised
world, the ones who have the means to support others.3 Who can look at the pain-
fully emaciated children of Niger without feeling the urge to do something? But
why should this require any philosophical reflection? Surely we should not waste
time on philosophical enquiry; surely we must do something? (More radically:
The philosophers have only interpreted the world, in various ways; the point,
however, is to change it.). Clearly, it is not easy to know the right response. How
does one, for example, choose between giving money for the drilling of a well in
Zimbabwe and giving start-up money to local entrepreneurs in Rwanda? To know
how best to respond seems a practical problem that requires international agricul-
tural policy experts, and the acumen of NGOs or other specialists on developmental
aidbut not, perhaps, philosophers.
This chapter argues for a more constructive role of ethics in this debate.
Empirical knowledge is necessary but not sufficient for practical decisions; by itself
it does not tell us who should do what in order to achieve which end. Experts can
only give advice if we have prior knowledge of the precise ends that we desire to
achieveand to identify obligatory ends is precisely the task of philosophy, or so
I will argue in the section What We Need to Know in Order to Act Morally. But
can ethics provide rational justification of ends? I will provide such a justification.
In the section Why Should We Help the Poor? an argument is developed for
asserting that a form of individual freedom is a fundamental value of all morality.
In a concluding section, it will be sketched in which way the justified end gives
practical orientation for helping the poor (Helping to HelpA Conclusion).

What We Need to Know in Order to Act Morally

Actions are purposeful goal-directed behaviour; they are performed in order to

realise or archive an end by way of some means. This can also be expressed as
follows. If someone acts genuinely, she intents the end of her actions to be realised
in a certain way, and she implements a kind of direct control or guidance over her
behaviour. What is required for someone to act? Amongst the basic conditions is

1
World Development Indicators 2007. The World Bank. March 2007.
2
Black et al. 2003. Where and why are 10 million children dying every year? The Lancet
361:22262234.
3
Human Development Report 2006. United Nations Development Programme. November 2006.
Why Should We Help the Poor? Philosophy and Poverty 145

the capability of the agent to set herself an end and to select practical means,
i.e. the particular behaviour, by which she manages to achieve the aspired end.4
This account of action does not alter in the case of imperatives, i.e. demands to
realise an end by way of certain behaviour. All this seems to be a conceptual truth
about action in general.
Let us look at poverty again. Help the poor! was introduced above as a widely
accepted, or seemingly self-evident, demand to act in a certain way. But, as it stands,
it does not describe a particular action; it does not tell us exactly what we should
do. Even if it gives our assistance some direction (the poor), we must specify the
particular end (e.g. an improvement of the material conditions of people in Niger,
the provision of access to medication in Congo, food for the homeless in the United
Kingdom). Also the means must be selected (e.g. donating money, organising
transport of goods to a war region, working as a volunteer in a soup kitchen), and
the specific actor or addressee of the demand has to be identified (e.g. myself,
another, a charity, the state). To be sure, we can describe any specific act of help,
e.g. Peter is giving US$100 to UNICEF, in general terms: Peter helps the poor.
Yet for Peter or anyone to act a particularisation is necessary. We cannot do things
in general, but only in particular. And due to our limited resources and capabilities,
we can perform only very few of the unlimited possible particularisations of
helping the poor. That is why we must be highly selective. We have neither the time
nor means to help everyone who is in need in all possible ways. For this reason Kant
calls the duty to help others an imperfect duty, it will always be imperfectly satisfied
(while perfect duties can be perfectly satisfied, like the duty not to murder)5:
I must decide whom to helpbut also whom not to help.
How, then, do we get to the particular action? If we do not want the selection to
be arbitrary, nor to be based merely upon subjective likes or dislikes, we must look
for criteria for the selection of particular acts. This will be the most rational way to
proceed (which is, of course, a truism).6 What does it mean to choose an action
rationally? The choice of its particulars must be guided by practical reason. The
means must be selected as efficient and adequate to achieve the end, and the end
must be chosen for good reasons. Though most attention has been given to means
and ends, the rationality of an action also depends on the choice of agents.7 It can

4
Obviously this is simplified because the performance of a certain activity can sometimes itself be the
end, e.g. if someone hikes. For the present purpose, however, the model of actions above suffices.
5
Grundlegung zur Metaphysik der Sitten, AA IV, 421424. This does not imply that imperfect
duties are optionalthey are hard demands, not mere moral afterthoughts. The same distinction
is made today mostly by talking about negative and positive duties.
6
I will not discuss it here whether this is giving rationality too much authority. After all, any
attempt to argue for or against rationality being our ultimate guide is itself in the realm of
reasonand thus an at least implicit acknowledgement of its uncircumventable authority (See
Thomas Nagel, 1997).
7
One can add further aspects of an action that are open to rational scrutiny, e.g. time and place.
There can be good reasons for an agent to do something now or rather tomorrow; to do it here or
rather somewhere else.
146 C. Illies

be rational, depending on the context, for me not to act at all, or for me to do something,
or to support someone else in doing something. It must be noted that the three areas
where reason can guide actions are mutually interwoven; the criteria involved in the
selection of ends, of means, and of particular addressees, are all dependent upon
each other. Who should do something, for example, depends (at least partly) on the
available means. Yet the most obvious dependency is between the means and the
ends. The end of an action is decisive for the appropriate (and thus rational) means
to achieve it. Ends have a logical priority; they are the first thing that we need to
know when we specify an action. And the more precisely the end is stated, the more
particular actions can be inferred. This can be illustrated with the demand to help
the poor. The end (the provision of help for the poor) is not sufficiently specified as
to allow us to say what to do in a particular situation. Practical reason may tell us
that we should look for the most efficient means of achieving the end; that one
should act in a way that a maximum output is achieved from a given inputand
that not much resource is wasted. Can experts tell us what the most efficient
responses will be? No, because we need to know exactly what the aspired outcome
is. And here the demand is simply underdetermined; there is no efficient way to
help the poor in general.
We questioned in the beginning whether we need ethics at all in face of global
poverty, or whether the demand seems self-evident and the choice of particular
actions should be left to specialists on developmental aid and the like. The answer
will be yes and no. No, because we can leave particular recommendation to experts
once we know precisely what we should promotebut also yes, since we need to
know the exact end of our (demanded) actionand this is the contribution of ethics.
No empirical science can provide normative knowledge. The subject matter of
economic, social, or political sciences consists of highly complex constellations and
interrelations of events in complex systems of human interaction; but they cannot tell
us by themselves what achievements are desirable within these systems. (In Kantian
terms, they can provide us with merely hypothetical imperatives.) Ethics is the
discipline that deals with exactly this normative question; it searches, at least in its
more rationalistic tradition, for reasons why we should aim at, or desire, something;
it provides rational justifications of ends. Thus for particular moral actions, ethics
and empirical knowledge have to work together; the first gives the desired goal, the
second the knowledge of how to achieve it. And that is why ethics plays also an
important and even indispensable role in the practical problem of poverty: it gives
our efforts to combat human suffering a clear direction that allows us, in situations of
limited resources and means, to focus on the most rational actions. (These actions
can look very different if we follow John Rawls, who focuses on freedom and oppor-
tunities, or Peter Singer, who asks for the maximisation of the satisfaction of
conscious preferences.) And, vice versa, ethics needs empirical knowledge about
poverty, its conditions, and the possibilities of overcoming particular forms of it,
because without it, we would only know the endbut not the actual path to it.
Empirical poverty-research without ends is blind, or, as we might put it, ethical
reflection without empirical research is empty. This is the role of ethics.
Why Should We Help the Poor? Philosophy and Poverty 147

But can it fulfil it? While it is generally accepted that we can choose right
means rationally, it is much debated whether there can also be a rationality of
ends. Aristotle thought so; for him the rationality of ends is assessable by the
virtuous. But David Hume and Max Weber argue that all we have is the rational
selection of means, and that ends are not rationally chosen but given by other
sources, such as emotions. Let us therefore turn to the challenge of justifying
morally demanded endsand in particular, for those precise ends which underlie
the demand to help the poor.

Why Should We Help the Poor?

Is it possible to justify moral demands on the basis of compassion? Schopenhauer,

amongst others, has developed an ethical theory of compassion, according to
which someone is moral when he feels the distress of other people and tries to
mitigate their pain. But compassion is insufficient as an ethical theory because it
does not give precise ends for actions, and thus it fails to provide orientation for
particular acts. More so, the compassion of agents is often too idiosyncratic; it
depends on cultural and religious contexts and subjective dispositions, on likes
and dislikes. Moreover, it focuses on individual suffering when it is apparent
(e.g. the emaciated child in Niger that we see on a photography) and is therefore
guided by contingencies. Compassion gives agents strong impulses to do some-
thing in a particular situation, but can hardly be seen as an argument for choosing
rationally between different actions.8 How, then, is a rational justification of ends
possible? Intuition or mere conceptual analyses leave more questions open than
they answer; at least, it is hard to see how they could provide a legitimisation.
One might suggest deducing them, but this only works if we have some prior
normative notion, some value or principle, which then would be in need of justi-
fication itself.
Faced with this problem in the context of his theoretical philosophy, Kant
developed a new methodology that proves also to be promising in ethics. Such
argument goes roughly as follows: We start with some X that we take for
granted, for example that we have experience, and look for a necessary condition
Y, of this X being possible. If there is some Y, for example that all experience is
in time, and if it is a necessary condition for it being possible (because we cannot
imagine any experience that is not in time), then we can regard a judgement that

8
That is why Hannah Arendt saw compassion as dangerously de-politicising. The vagueness is to
a certain extent also due to the person who suffers. How much the very same situation makes
someone a possible object of compassion differs and depends, for example, on how she experi-
ences her situation subjectively, how well she expresses her suffering and in which way it is
communicated.
148 C. Illies

Y is the case as being justified (at least as much justified as X). Kant calls this a
transcendental deduction; today it is called a transcendental argument.9 Kant
expanded his new methodology to ethics; he wanted to justify the categorical
imperative transcendentally. The third part of the Grundlegung der Metaphysik
der Sitten, documents his attemptsbut they also show his failure, mainly
because he cannot identify a firm starting point (X) for practical reason. In his
later work, Kant admits this problem rather frankly and gives up his trans-
cendental aspirations in ethics.10
Let us be more optimistic about the methodology Kant introduced. What could
be a starting point for a transcendental argument for ethical reflection? A possible
candidate is that we have a notion of good and bad. We leave it open as to what the
form or content of this notion is. We merely begin with a general positive or nega-
tive evaluation of some kind, in such a way that this X could be accepted by the
different ethical systems, by virtue-ethicists as much as Utilitarians, Deontologists,
and Hedonists. They all regard some things (actions, states of affair, habits, conse-
quences, etc.) as good (positive, advisable, recommended, etc.).
What does it mean to call something good? Whatever our ethical system is, it
seems obvious that the good X (state of affairs, action, duty, etc.) should be sup-
ported or realised. A deontological theory of duties spells out directly what should
be done. Consequentialist theories conclude from their notion of good (e.g. general
happiness or preference satisfaction) that we should bring this good state about by
acting appropriately. Virtue-ethicists will agree that it is good to have or develop
certain virtues or to realise the good that is given by praxis (as MacIntyre would
argue). We can spell this out generally as a conceptual truth about goodness: calling
something good means that it is something we should have an active pro-attitude
towards. (And, obviously, the inverse can be said about our notion of bad.) If some-
one denies this (Z is good but it does not need to be respected), then she seems
not to understand good properly. It is a conceptual truthin Kantian terms an
analytical truththat it is good to support the good. Of course, that does not imply
that all possible ways of supporting something good are themselves good or recom-
mended; it is only in general good to have this active pro-attitude. Particular cases
still demand particular considerations; and whether a specific realisation of this

9
It should be added that transcendental arguments are faced with several problems, for example:
How do we find out whether something is a necessary condition for the possibility of something
else? And what can serve as a self-evident starting point? (Already Fichte supposed that Kant is
presupposing too much.) A more modern objection reads: Even if we can demonstrate transcen-
dentally that we must think that something is in a certain way, how can we be sure that it is like
thatmaybe the way we must think has nothing to do with how things really are. In the current
debate this point has been made famously by Barry Stroud (but has been discussed earlier by
Hegel).
10
Kritik der praktischen Vernunft, p. 46 (in Kants Werke, vol. 5). We find a total reversal of
positions (Karl Ameriks 1982, p. 211. From now on, Kant considers the categorical imperative
as a Faktum der Vernunft. Whatever that exactly means (probably it is an appeal to intuition10); it
is certainly no longer a transcendental argument.
Why Should We Help the Poor? Philosophy and Poverty 149

pro-attitude can rightly be judged as good will depend on the circumstances (e.g.
whether an action violates some other good). Further, it does not imply that every-
thing that someone regards as good must be acknowledged from our perspective as
good; we might disagree heavilybut whatever someone regards as good, he is
committed to approve of the pro-attitude towards this good.
Starting from this general positive evaluation of a practical pro-attitude towards
the good, we can ask the transcendental question: what is the necessary condition
for the possibility of having an active practical pro-attitude? Well, that there are
beings that are able to have this pro-attitude. The existence of pro-attitudes without
someone having them is unimaginable. There cannot be a smile without some
one smiling (the Cheshire cats smile in Alice in Wonderland being a notable,
because intentionally logically absurd, exception!)and there cannot be an active
pro-attitude without someone having this attitude. We can be even more specific: as
far as we know, the only beings with active pro-attitudes towards the good are
human beings who act intentionally. And the necessary condition for an active pro-
attitude is not merely the existence of human beings, but also that they are capable
of having this attitudethat human beings can act in a supportive way. If we think
about the conceptual analysis of actions above, we can specify these necessary
conditions further. There must be beings that have some understanding so that they
can behave purposefully, set themselves ends, and select the appropriate means.
Moreover, they must have some understanding of what the right thing isotherwise
they cannot actively support the good.11 Further, they must have the necessary
freedom to realise their end and implement a kind of direct control over their behaviour.
This freedom to act, in combination with the right understanding, directed towards
doing good, might be called moral freedom.12
Here the argument has come to its completion. If there is something good, then
it is good that the good is supported, and if the capability to do so is a necessary
requirement for this support, then it is also good that human beings have this capa-
bility, that is moral freedom, and that they exercise it. (And the starting point does
not even have to be a concept of good, it could also be of duty or rights.) We have
made a transcendental move towards the goodness of a certain freedom (and could
also add: of right understanding etc.) qua being the necessary condition Y for X
being possible (X is having an active pro-attitude towards the good). Thus, moral
freedom, as human freedom in support of the good, is itself good. This justification
is not a deduction; the suggested transcendental reasoning does not start with any
particular notion of good in order to derive normsit begins with any notion of

11
Needless to add that they can be wrong about the good, and history as much as daily life gives
plenty examples of this error. But this is a different problem. It is still a necessary condition that
humans can be right about the good for them to actively support it.
12
In a Kantian tradition, this would amount to the autonomy of the agent, that is his or her ability
to conform his or her behaviour to universal laws that obligate it. In the Grundlegung, for instance,
Kant says that autonomy is freedom of the will (4:447), but also that the categorical imperative
commands neither more nor less than autonomy (4:440).
150 C. Illies

good that we may happen to have. The first time the argument makes an explicit
statement about what is good is when it states that it is good to support the good.
We can put the result as a normative principle: exercise and promote moral free-
dom!13 For each of us it means that we should realise our freedom, and we should do
it in a manner that supports the freedom of others so that they can do the same. Thus
irrespective of what we hold to be morally good, we are also transcendentally com-
mitted to acknowledge the goodness of moral freedom and to enlarge its realm.14
Roger Brownsword has recently developed a similar argument for the support of
human dignity as a value that transcends disputes about whether we are doing the
right thing in a particular case.15 He starts from the idea of a moral community
being uncircumventable for any ethical dispute about what we should do, that is a
community committed to doing the right thing, that holds commitments sincerely
and in good faith, and treats its standards as categorically binding and universalisa-
ble.16 In a second step, Brownsword asks, in a transcendental manner, what are the
conditions of this community being possible and reaches at a degree of personal
freedom and responsibility; this he regards as a precondition of the dignity of
human choice and responsibility.17 While the justification suggested above asks for
transcendental conditions of the possibility of promoting the good in general,
Brownsword is raising a similar question in a Wittgensteinian mannerhe is focusing
on the embedding of any such investigation in a communal praxis. His approach has
the advantage of linking the argument immediately to practical concerns, but it
gives rise to a difficulty. If we look at the moral community we live in, it is not
relevant to include people far removed from us, such as the poor in Niger. In order
to sustain our moral community we do not seem to need their freedom and respon-
sibility. (Or Brownsword will have to demonstrate that any moral community is
ultimately a global community.) It is here where the suggested conceptual-
transcendental argument is stronger. By focusing on the conditions of any notion
of good and bad, it transcends the limits of any particular community or ethical
praxis and concerns all beings that are capable of promoting the good, including the
poor who need help most urgently.
Does this transcendental argument work? There are possible reservations. A first
objection might be raised about the starting point. A moral-nihilist sceptic might
ask: why should we assume that there is anything good at all? Nietzsche would

13
Obviously, this comes rather close to Kants second formula of the categorical imperative. Act
in such a way that you always treat humanity whether in your own person or in the person of any
other never simply as a means but always at the same time as an end! Grundlegung, p. 429
(in Kant, Kants Werke 1968, vol. 4).
14
A related argument has been developed by Herbert Hart; who reasons that if there are any moral
rights at all, it follows that there is at least one natural right, the equal right of all men to be free.
Cf. H.L.A. Hart (1967, p. 53).
15
Roger Brownsword (2007, p.13).
16
Ibid, p.14.
17
Ibid.
Why Should We Help the Poor? Philosophy and Poverty 151

surely call this assumption a deception; all we have is mere will to power. As it
stands, the argument does not address (let alone refute) this radical normative scep-
ticism; it remains internal to ethical reflection. But that seems enough for our
purpose; the point is not to secure a normative notion against radical scepticism;
this would demand a much more elaborate argument (e.g. by showing that we are
inevitably committed to making judgements about something being morally good
or bad18). We can therefore bracket radical scepticism by setting the starting point
in a hypothetical fashion: if there is any notion of good and bad, then we must
promote moral freedom.
A second and practical reservation might be: does it make sense at all to talk
about moral freedom, or is this a contradictio in adiecto? If someone is free, then
she seems free to do whatever she wants, not merely to promote the good. Thus any
restriction of freedom towards the choice of some end is already limiting the very
freedom it is supposedly about. That is correct and still not a fatal objection. Of
course, promoting the freedom of others never guarantees that this freedom will be
used in the morally right, namely freedom-supportive, way. If we liberate others,
we also enable them to use their newly gained freedom in an immoral way. But this
does not mean that we cannot promote freedom in a way that enables us or others
to act morally or that makes it more likely (though the risk of it being abused
remains inevitable). If, for example, people are in extreme need it is unlikely that
they will be able to become engaged in any good-promoting activity; they are busy
keeping themselves alive. Humanitarian aid is therefore an essential step towards
the promotion of the moral freedom of the recipients. It is also possible to increase
moral freedom by educating people in developing a greater sensitivity for the
sufferings of others. Another way is character formation, if we understand character
as the individual conditions that can help or hinder fulfilling the laws of
morals.19 Having character is an important subjective help, but, again, it does not
determine whether or not one will be morally good. One can always use ones
freedom to abdicate freedom.

Helping to Help: A Conclusion

Let us return to our original question. What does the demand to promote freedom
amount to, with respect to practical decisions and actions against global poverty?
It gives a precise direction for our moral obligation: we should aim at a situation in
which all persons, including the poor, have moral freedom and can exercise itwe
are obliged to help others so that they can help: not life as such, nor the happiness
of all people, but the dignity of human moral choice and responsibility (as we
might term it following Brownsword) stands at the centre of moral concerns.

18
See for example: Alan Gewirth (1970) and Illies (2003, ch. 5).
19
Kant, Metaphysik der Sitten, AA vol. 6, p. 217.
152 C. Illies

What difference does it make in practice? When we look at people in extreme

need, the end moral freedom will also call for humanitarian aid in the form of
immediate alleviation of peoples suffering, because to be alive and having access
to basic goods is a necessary precondition for any freedom whatsoever. In the long
term, however, this concept will focus on enabling people to strive for something
other than the provision of certain goods or the satisfaction of specific needs. The
point of help is to open possibilities of acting and this will determine the choice of
means. Moral freedom is a form of positive freedom, that is, a persons actual ability
to do somethingrather than merely her negative freedom arising from non-
interference. (This does not mean that negative freedom plays no role; it remains
the precondition for any positive freedom and must therefore be secured.)
In many ways, the end moral freedom will result in practical demands that are
closely related to Amartya Sens capability approach. In his seminal paper Equality
of What? Sen critiques a focus on utility or basic goods because of the unequal
ability of people to use these goods. Sen argues that true equality is only achieved
if we look at equal basic capability as a morally relevant dimension taking us
beyond utility and primary goods.20 With capabilities Sen refers to a person
being able to do certain basic things [], e.g., the ability to meet ones nutritional
requirements, the wherewithal to be clothed and sheltered, the power to participate
in the social life of the community.21 In more abstract terms, capabilities are about
self-determination; they refer to the various combinations of functionings (beings
and doings) that the person can achieve. Capability is, thus, a set of vectors of
functionings, reflecting the persons freedom to lead one type of life or another []
to choose from possible livings.22 Only when all functionings are guaranteed can
people truly act out of personal choice (and to provide them is seen by Sen as
the task of society). The capability approach has concrete consequences for
developmental help: For example, one should not begin with economic, but with
institutional and social reforms, such as improvements in education and public
health, to provide the capabilities that precede a fair economical growth.
Sens approach (and in particular Martha Nussbaums version thereof) is closely
related to the suggested moral-freedom approach; in all these approaches the fur-
thering of a human ability is central to all morality. But while the suggested
approach is one-capability approach (because the transcendental argument justi-
fies only moral freedom as a central end), Sen takes a broader line; his approach
does not focus on a particular capability (and the conditions for its exercise). To be
sure, he also includes moral freedom as the capability to act morally; at least some
of his remarks can be read in this way. In an economic study of India, he and Jean
Drze write:

20
Equality of what? p. 220.
21
Equality of what? p. 218.
22
Amartya Sen (1992, p. 40).
Why Should We Help the Poor? Philosophy and Poverty 153

Participation also has intrinsic value for the quality of life. Indeed being able to do some-
thing not only for oneself but also for other members of the society is one of the elementary
freedoms which people have reason to value. The popular appeal of many social movements
in India confirms that this basic capability is highly valued even among people who lead
very deprived lives in material terms.23

An even stronger reference to moral freedom is to be found in Sens concept of

agency, one of the two aspects of being a person (the other aspect is ones well-
being). Qua being agents, humans are strivingand are even committed24to act
morally. As Sen writes: the agency aspect is important in assessing what a person
can do in line with his or her conception of the good.25 Nevertheless, neither moral
capability nor the development of agency is of central ethical value for Sen; he sees
them rather as a consequence of the presence of other capabilities. For him people
with full capabilities will act, after a deliberative process, in a constructive and just
way; although one cannot help but fear that this is a rather questionable optimism
about human nature.
Sens main problem, however, is the demanded support of capabilities tout
court. Why should all capabilities be valuable, independently of what they are used
for?26 This is neither plausible, nor does it find any rational justification. When
Fagin trains Oliver Twist to be a good pickpocket, this is surely not an applaudable
expansion of Olivers capabilities; and similarly much military help for developing
countries has obviously expanded the wrong capabilitiesnamely the ones which
aid military aggression. Needless to add, Sen does not wish to include them; but in
order to discriminate between good and bad capabilities, the capability approach
needs rational criteriaand this is exactly what the transcendental argument
provides. (Martha Nussbaum also tries to develop such criteria by suggesting a list
of essential human capabilities that she understands as fundamental entitlements in
need of political elaboration.27 Although her list is plausible, it remains problematic
because of its lack of proper justification.)
Is the promotion of a moral capability a sufficient or too narrow a foundation for
ethics? Do we not have to include other moral values for a comparative empirical
investigation about what to do? Moral freedom as the only end seems to be under-
specified. The suggested approach might lead to very few demands and will not call
for changes in grossly unjust situations as long as the people involved exercise their
freedom to act morally. When Sen speaks of human agency he raises a similar criti-
cism. The well-being aspect of human beings includes a plurality of interests of a

23
Amartya Sen and Jean Drze (1995, p. 106).
24
Sen is following Adam Smiths idea of commitment being essential to a person.
25
Amartya Sen (1985), p. 206.
26
See for this critique Crocker 1995, p. 167f.
27
Only then are we able to operate the capability approach according to Nussbaum: Once we
identify a group of important functionings in human life, we are then in position to ask what social
and political institutions are doing about them (Nussbaum 1992, p. 214).
154 C. Illies

person which have to be considered, while a monist focus on agency is rather limited:
There is no way of reducing this plural-information base into a monist one without
losing something of importance.28 In other words, people can surely act morally on
a very minimum level; even a starving person might still show her humanityand
often much more than people who have all sorts of material goods.
But let us look again at what exactly the transcendental argument claims to jus-
tify. The point was that we need to evaluate the general capability to support any
good. Therefore moral freedom must be understood in a broad senseit is not lim-
ited to the capability of supporting some specific, but rather any possible good
thing. Thus to promote moral freedom includes opening the individuals possibili-
ties of new ways of acting morally. People who are very poor, for example, can
surely still do some good things (they can share the little that they have, they can
listen to someone in sorrow, and so on), but there are many things they cannot do
because their range of action is severely limited. With more material means of act-
ing, but also through education and information, they will be able to expand their
reach. An obvious example is the difficulty that many of the rural poor have in act-
ing to conserve natures diversity; tropical deforestation and land depletion is often
the only way for people to make ends meet. Here, sustainable agroforestry systems
that allow for long-term coexistence of the poor and their environment would not
only be the most plausible goal, but resulting from the transcendental justification
of moral freedom, it is the best way to guarantee this freedom in the long run. Such
a rich notion of moral freedom will include all that Sen covers with the well-
being aspect of the human being.
The promotion of moral freedom must be based upon a promotion of negative
freedom from constraint and also the supply of basic goods (such as food and
shelter). To provide these is the obligation of those who are in a position to help
those whose moral freedom is under threat. But there are also duties that everyone
has with regards to himself. If moral freedom is intrinsically valuable, then we need
to care for our own moral freedom as much as for the (conditions of the) moral
freedom of others. We are obliged to inform ourselves about others needs, but also
to develop the skills and talents that we need for the acquisition of such informa-
tion29for example respect for human dignity and rational self-governance, but
also other talents that might widen our range or (moral) actions, such as sensitivity
for anothers suffering.
Thus the moral-freedom approach will have to be embedded in a hierarchy of
rights and goods that must be secured as preconditions of this freedom, it will
also include duties towards ourselvesbut it will not stop there.30 Since moral

28
Sen 1985, p. 208
29
Kant has reminded us forcefully how important it is to develop our own talents.
30
One example of the hierarchy of goods-claims approach can be found in Michael Boylan (2004),
ch. 3.
Why Should We Help the Poor? Philosophy and Poverty 155

values are transmitted through specific moral communities, it will also be important
to support them: different cultural and religious traditions deserve respect and
even support insofar as they provide people with an idea of the goodand inso-
far as the good can only be realised within such moral communities. It is here
that the moral-freedom approach transcends the individual as its target; it will
consider the individual as part of a group or tradition. But the value of a com-
munity is not prior to, or higher than, the individuals value; communities are
valuable to the extent that they enable individuals to be morally free. The com-
munitys value is also restricted in a second way: Although the moral-freedom
approach is open to, and compatible with, very different moral systems (moral
freedom is a kind of meta-value), it ends exactly where moral freedom is not
affirmed. Cultural or religious communities that promote oppression of others
or even the limitation of equal moral freedom of its members do not deserve
promotion, at least inasmuch as they are directed against general moral freedom.
Here the moral-freedom-approach turns into a critical endeavour; help for the
poor demands the support of their communities only as long as they support the
moral freedom of its members.
A danger of paternalism seems to lurk behind the demand for freedom. Do we
limit our help for others and their communities proportionally to the extent that
they do what we want them to do, namely to support moral freedom? Yes, if
paternalism is defined as a practice in which any value of the agent is imposed
upon the person most affected by the decisions to be madebut no, if we take
the pivotal idea of moral freedom seriously and act in its support. Moral freedom
is the condition of any moral system, as the transcendental argument has shown,
thus also of the moral system of any other person (if his moral community does
not accept it, then it is to this extent logically self-defeating). Thus to respect
moral freedom is the best way to respect the values of other people and their
power (and freedom) to make decisions. It is therefore not particularly meaning-
ful to call the moral-freedom approach patronising; the point is not to force a
value upon others but rather to support a meta-value that is the condition for the
possibility of any moral system.
This is also the reason why the moral-freedom approach cannot be seen as a
subtle form of instrumentalisation. We do not manipulate others, or the poor, so
that they help otherswe promote their freedom to do so; that is why we can never
be sure how they will act. Freedom cannot be instrumentalised without losing its
central feature, namely it being the capability of self-determination. Thus any suc-
cessful application of the moral-freedom approach will have to be guided by deep
respect for the dignity of all human beings as free agentsor it ceases to be a sup-
port of moral freedom.
This is the particular end that Ethics contributes to the demand to help the poor.
If we take this demand seriously and look for concrete actions that follow from it,
we will have to turn to experts and ask them about the ways in which we can expand
the moral freedom of agency in concrete situations.
156 C. Illies

References

Ameriks, Karl. 1982. Kants Theory of Mind, Oxford: Oxford University Press.
Black, Robert, Morris, Saul, & Jennifer Bryce. 2003. Where and why are 10 million children
dying every year? The Lancet 361: 22262234.
Boylan, Michel. 2004. A Just Society. Lanham, MD and Oxford: Rowman & Littlefield.
Brownsword, Roger. 2007. Human dignity: empowerment, constraint, and the conservation of moral
community unpublished manuscript. Available by contacting the editor, Michael Boylan.
Gewirth, Alan. 1970. Must one play the Moral Language Game? American Philosophical
Quarterly 7(2): 107118.
Hart, H.L.A 1967. Are there any Natural Rights? in A. Quinton (ed.), Political Philosophy.
Oxford: Oxford University Press, pp. 5366.
Illies, Christian. 2003. The Grounds of Ethical Judgement. Oxford: Oxford University Press.
Kant, Immanuel. 1968 [17471790]. Kants Werke (Akademie Ausgabe). Berlin: de Gruyter.
Nagel, Thomas. 1997. The Last Word. Oxford: Oxford University Press.
Nussbaum, Martha. 1992. Human functioning and social justice: in defense of Aristotelian
essentialism, Political Theory 20(2): 202246.
Sen, Amartya. 1985. Well-being, agency and freedom: the Dewey Lectures 1984, The Journal
of Philosophy, 82(4): 169221.
_____. 1992. Inequality Reexamined. Oxford: Clarendon Press, New York: Russell Sage
Foundation, and Cambridge, MA: Harvard University Press.
Sen, Amartya and Jean Drze. 1995. India: Economic Development and Social Opportunity,
Oxford: Clarendon Press, p. 106.
Health Care Justice: The Social Insurance
Approach

David Cummiskey

Abstract There are four basic models for health care systems: the private market
insurance model, the national single-payer model, the national health service model,
and the social insurance model. The social justice debate over health care usually
focuses on the comparative efficiency and quality of competitive private market
insurance and the universal coverage and equity of national health care systems. It
is a mistake, however, to think that a universal right to health care services requires
a single-payer, government-run, national health care system. The social insurance
model of Germany, France, Japan, and many other countries, deserves more atten-
tion, as it incorporates the strengths of both market models and national health care
models.

Keyword Social insurance, health care justice, right to health care, health care
financing, health care reform

Introduction

There are four basic models for health care systems: the private market insurance
model, the national single-payer model, the national health service model, and the
social insurance model. Private Market Insurance systems are for-profit, contrac-
tual insurance agreements between individuals and private insurance companies,
which are often mediated, negotiated, and financed by employers for employees.
A National Single-Payer model is a national, government-funded, health payment
system. This is the dominant system in Canada and Australia, and the definition
also fits the national Medicaid and Medicare systems in the United States.
A National Health Service system is single-payer and also government-run, with
public hospitals and clinics, and medical providers as employees of the NHS sys-
tem. The British NHS is the paradigm case of this model. Social Insurance models
are the most common and least understood system of universal health care. Most of
the European universal health care systems, including the World Health Organization
(WHO)s top-rated French system, are social insurance systems. The Japanese

M. Boylan (ed.) International Public Health Policy and Ethics, 157

Springer Science + Business Media B.V. 2008
158 D. Cummiskey

health care system, which is rated by the World Health Organization as the best for
mortality and morbidity, is a social insurance system as well.
The social justice debate over health care usually focuses on the relative merits
of private market insurance versus the nationalization of health care. The social
insurance model deserves more attention, as it incorporates the strengths of both
market models and national health care models. It is simply a mistake to think that
a universal right to health care requires a single-payer, government-run, national
health care system. In addition, the distinction between public and private financing
of health care insurance needs to be reconceptualized. Indeed, the public financ-
ing of social insurance is in many ways similar to the financing of a private market
system. Specifically, the social insurance model is funded primarily by employer
and employee contributions like private markets. Moreover, the social insurance
funds are not run by the government, and yet as in nationalized health care, there is
still a public guarantee of basic health care for all.

The Right to Health Care

The right to health care raises a complex array of difficult questions. The nature of
the right, the content of the right (i.e., the health care services that are due), the
financing of the health care services, and the relationship between patients, providers
and payers all raise contentious issues. Here we will focus on the nature of the right
and the financing of the health care system. The right to health care itself is best
conceived as a universal human right that requires society to provide secure and
reasonable access to basic health care services. This conception of rights follows
J.S. Mills classic account and Thomas Pogges recent expanded conception of
human rights.1
Pogge argues that:
[b]y postulating a human right to X, one is asserting that any society or other social system,
insofar as this is reasonably possible, ought to be so (re)organized that all its members have
secure access to X Avoidable insecurity of access, beyond certain plausibly attainable
thresholds, constitutes official disrespect and stains that societys human-rights record.
Human rights are, then, moral claims on the organization of ones society.

One way to secure a human right is to have a government-based legal entitlement.

In the case of the retired elderly, for example, a national social security system, with
a legal entitlement to a basic income, may help to secure the basic human right to
subsistence for all. It is natural to assume that human rights must be secured by legal
entitlements. Alternatively, however, in a traditional Confucian culture, the needs of
the elderly are secured by a strong sense of filial piety and the responsibility that
children assume for the care of their parents and elders. A strong sense of filial
responsibility and internalized social expectations motivates adult children to

1
J. S. Mill 1979/1861, Chapter 5; and Thomas Pogge 2002, p. 64.
Health Care Justice: The Social Insurance Approach 159

support and care for their parents and relatives.2 Indeed, filial responsibility may in
fact do a better job than a legal entitlement right in securing adequate social security
for the elderly. In most cultures, a sense of parental responsibility similarly
accounts for the basic needs of almost all young children without any direct state
social security support. Direct state action is thus one way to secure a right, but it is
not the only way. What is important is that human rights are secured. Whether this
is done by direct legal entitlements and protections, or social conventions, or civil
society and nonstate actors, is secondary; effectively securing the right is primary.
This conception of rights, including the right to health care, leaves open the par-
ticular means of securing the right. In principle, if not in actual practice, a market
system that in fact provided health insurance at an affordable price could secure the
right to health care. In practice, of course, a private market system must be supple-
mented with alternative funding, or free care, for individuals without adequate
wealth or income. A market-based system can also use tax policy in the form of tax
deductions and/or tax credits as a supplement and incentive to make health care and
private health insurance affordable for the working poor and middle class. In addi-
tion to private markets, however, government-based systems like Medicaid and
Medicare are usually necessary to provide secure access to health care services for
the many who otherwise simply could not afford it.
In the United States, 47 million people, or 14% of the population, do not have
health insurance. The uninsured are defined as individuals without any health insur-
ance for the entire year. In addition, even more people, an additional 1520 million,
lack insurance coverage for part of a year. Since the poor and elderly have Medicaid
and Medicare insurance provided by the government, the real health insurance crisis
is faced by the near-poor and lower-middle class. Of those with household incomes
under $25,000, 24% or 14.6 million are uninsured. These families really cannot
afford private health insurance and so government programs must be expanded to
provide or subsidize insurance for this income group. (In 2003, the average premium
for individual health insurance coverage was $148 per month and family premiums
were $240489 per month depending on the region.)3 Another 15 million households
earning between $25,000 and $50,000, or 21%, are also uninsured. These families
often could buy insurance but it would involve significant financial sacrifice to do so.
Proposals to provide tax breaks or other assistance to help finance health care for this
income group may also be appropriate. Surprisingly, however, 8.3 million households
earning between $50,000 and $75,000, and 8.7 million earning $75,000 or more are
also uninsured. More households earning over $50,000 (17 million) are uninsured
than poorer households earning under $25,000 (14.6 million).4 For these families, the
decision not to have health insurance is more of a choice; they have the means to buy

2
On Confucian ethics and rights, see Ihara (2004) and Cummiskey (2006).
3
Kaiser Family Foundation, Update on Individual Health Insurance, August 2004 http://www.kff.
org/insurance/upload/Update-on-Individual-Health-Insurance.pdf.
4
United States, 2005 Census: http://aspe.hhs.gov/health/reports/05/uninsured-cps/index.htm#fig2;
and New York Times, Magazine, June 10th, 2007, p. 69.
160 D. Cummiskey

insurance and decide to spend their money on something else that they believe is
more important. Since United States hospitals must by law provide emergency
room care without regard for ability to pay, and since routine health care is less
expensive than health insurance, this choice not to have insurance often is rational
for the healthy individual. The overall social consequence, however, is that too much
routine care is provided by hospitals and cost-effective preventive care is too often
neglected. Consequently, the cost of health care for all is thus substantially higher.
Household Incomes of the Uninsured in the USA
Under $25,000: 14.6 million
$25,00050,000: 15 million
$50,00075,000: 8.3 million
$75,000 or more: 8.7 million
Households earning over $50,000: 17 million uninsured
As these income statistics suggest, most of the uninsured are also employed. In
2004, in the United States, 46% of the uninsured had full-time jobs and 28% had
part-time jobs. Of the uninsured, only 26% are unemployed. For the most part,
uninsured workers work for smaller employers, with 26% working in firms with 10
or fewer employees and another 21% in companies with fewer than 100 employ-
ees.5 The United States problem of the uninsured is not simply a problem of health
insurance for the unemployed and poor. If all employee benefit packages included
health insurance, the problem of the uninsured would be three quarters solved.
Unlike nationalized health care, the social insurance model (explained below) uses
mandatory employment-based insurance as the core of universal coverage.
The United States already incorporates a diverse array of health care insurance
into a complex system that blends private for-profit markets, nonprofit insurance organi-
zations, and the national, single-payer, Medicaid and Medicare system. The Federal
Employees Health Benefits Plan and the State Children Health Insurance Program
(SCHIP) are additional government-based health plans. The United States also has the
(more NHS-style) Veterans Health Administration with government-run hospitals.
As an alternative to introducing social insurance, as proposed below, it is possi-
ble that simply expanding federal health insurance programs and mandating
employment-based insurance could go far toward solving the problem of the unin-
sured without fundamentally altering the private insurance market. In this way,
universal access to affordable insurance for all can be addressed by a mixed market
system. This is the approach favored by Democratic presidential candidates in the
2008 election. This is also the approach the United States States of Oregon and
Massachusetts have taken towards universal coverage. Republican proposals, on the
other hand, emphasize tax deductions, tax credits, and market mechanisms to
expand access to health insurance. Both types of proposals have promise, and, in a
mixed system, there is no reason why both expanded government-based plans and
increased market/tax incentives cannot coexist.

5
United States, 2005 Census.
Health Care Justice: The Social Insurance Approach 161

On the other hand, a national system of free public health care that is radically
underfunded, seriously understaffed, and lacks an adequate health care infrastruc-
ture clearly will not secure access to basic health care services. For example, India
offers a government-based legal right to health care for all, but the government
program finances only 17% of health care expenditures and private insurance
makes up the remaining 83% of expenditures. This statistic strongly suggests that
the legal entitlement does not adequately secure the right. Although a nationalized
single-payer health care system provides a legal right to health care services, laws
alone do not secure rights.
It is simply a mistake to equate a right to universal access to health care services
with a requirement to have a nationalized, single-payer health care system. Indeed,
social insurance may be a better alternative for building an additional health care
financing system in both the United States and in developing countries that have an
inadequate public health care sector.

The Social Insurance Model

In addition to private insurance markets and government-based national health

services, we have to add the extremely successful social insurance systems. The
social insurance model originated in Germany with the formation of employment
and union-based sickness insurance funds. Although first set up by workers,
employers soon joined in the financing of theses funds. Over time, the funds grew
and spread across Germany. Starting in 1883 under Chancellor Bismarcks rule,
these funds were shaped into a broad and increasingly universal system of health
insurance that included regional, territorial funds. The social insurance model is
thus often called the Bismarckian model. Nationalized systems are called Beveridge
systems and are named after the United Kingdoms Beveridge Report (1942) that
led to the British National Health Service in 1948. The alternative Bismarckian
model of social health insurance is found in much of Europe, including Austria,
Belgium, France, Luxembourg, the Netherlands, Switzerland, as well as in Japan.
Both France and Japan have some of the best health indicators in the world. France
was rated the best health care system by the World Health Organization and Japan
has the highest life expectancy and the lowest infant mortality rate in the world.
Health care justice may be best served by the third way of social insurance.
The particular characteristics of social insurance systems vary from country to
country. In broad terms, social insurance systems typically involve the following
nine characteristics:
1. Multiple Health Insurance Funds. Often called sickness funds, these are
nonprofit, quasi-public but independent (nongovernment) organizations, which
collect revenues and pay health care providers.
2. Fund Membership. Funds were originally occupation-based but now include
regional funds, such as funds for small businesses and the self-employed.
Membership is based either on type of occupation or geographical region.
162 D. Cummiskey

3. Choice. Social insurance systems may include choice in fund membership and
it may include complete choice of providers.
4. Control. Representatives of employees and employers are responsible for man-
aging the funds within the constraints of general government mandates, which
include basic coverage standards.
5. Financing. The health (sickness) funds are financed primarily by employer and
employee contributions. Employee contributions are based on ability to pay
through a percentage of wages or income, which is set nationally by the funds
and/or the government. Employer contribution levels are set nationally by the
funds and/or the government.
6. Risk-Pooling. Social insurance systems provide insurance to all eligible persons
without regard to risk or previous health status. Social insurance always includes
a system of risk-pooling, and/or general government contributions, to promote
risk-based equity across funds.
7. Mandatory. Health insurance is (typically) compulsory for all either through
the social insurance funds or individual private insurance. Employment-based
funds include all dependent family members.
8. National Fund. The employment-based social insurance systems must be sup-
plemented by a general government fund (or funds) for the poor, unemployed,
and retired. General government funds also often subsidize co-pays and deducti-
bles for low-income workers.
9. Private Market. A private for-profit insurance market provides additional comple-
mentary and/or supplemental coverage of services and/or co-pays and deductibles.
Social insurance systems achieve universal coverage without a single-payer
national government-based health system. Social insurance health care systems are
nonprofit systems and the fund managers are focused on balancing costs and care
in the interests of patients/payers. The patients pay for the system in a more direct
fashion than in an NHS or single-payer system, and thus efficiency and costs are
more directly relevant to patients. In practice, since social insurance fund managers
represent patients, the funds can be more responsive and more efficient than nation-
alized health systems. Since social insurance is not a single-payer system, equity
across funds is achieved by risk-pooling. One of the most bizarre aspects of private
for-profit health insurance is its business imperative to sell insurance to those most
likely not to need it. Unlike for-profit markets, health funds do not strive to deny
health care coverage to the sick. Enrollment in social insurance funds is open to all
and coverage cannot be denied based on risk assessment. In short, the funding of
the heath care system is more direct than in a nationalized health system, the system
is more responsive, universal coverage is required, and the balancing of cost and
care is more immediate. It is thus not surprising that patient satisfaction is high.
Norman Daniels has argued that for physicians and providers, saying No to
patients in a private market system of health care is harder to justify than in a
national health care system (Daniels 1986). The first reason for this difference is
that market insurance systems are built on profit and so are not closed systems.
A denial of expensive, marginally beneficial care to one person does not have any
Health Care Justice: The Social Insurance Approach 163

clear impact on health care costs, access or quality for others. In a market, micro-decisions
that limit care for costbenefit reasons are just as likely to simply increase corpo-
rate profits. In a closed system, on the other hand, limiting access to marginal serv-
ices for the sake of providing other more beneficial, more cost-effective services
provides a more reasonable basis for allocation decisions. Second, in a private mar-
ket there is no public system for setting priorities and balancing considerations of
cost, quality, and access. In a government-run system, especially in democracies,
the health care system must be publicly defensible and is thus more likely to be
responsive to citizen interests as payers and patients.
Social insurance systems are also closed systems with public accountability, and
on both counts are indeed preferable to the nationalized models. Since national
government systems are funded by general taxation, they compete with all other
government services. Health care cost savings might go to better or cheaper health
care, but it could just as easily go to any other government program. As a patient I
have no reason to assume that cost savings will go to more efficient care or even
lower taxes for all, as opposed to increased funding for defense or corporate tax
breaks. In a social insurance system the funding of health care is direct and thus the
link between cost and benefits is even clearer than in a nationalized system. In addi-
tion, politicians and government officials have many responsibilities, concerns, and
constituencies. There is no reason to assume that benefit packages and services will
be very responsive to the overall best interest of the people. Social insurance fund
managers are more directly representative of payers and patients, and they are
clearly responsible for the costs and quality of the health care system. Social insur-
ance systems are thus likely to be more deliberative, responsive, and transparent
than both for-profit markets and national health services.
David Eddy has provided an interesting analysis and reconceptualization of the
alleged conflict between the individual and society in allocating health care services
(Eddy 1991). When health care allocation decisions are made in response to sick
patients, more cost-effective care, especially preventive care, is often neglected.
From the perspective of the ill patient, the preventive care is obviously too late. If,
however, allocation decisions are made from the perspective of a healthy person
deciding on a health care insurance plan, the benefit of more cost-effective care is
obvious. The conflict is not between sick individuals and society; it is between the
position of a healthy person insuring against illness and the position of perhaps
even the same person when they are already ill.
To sharpen the point, consider Eddys example of funding increased preventive
screening for breast cancer as opposed to funding high-dose chemotherapy with
autologous bone marrow transplant (HDC-ABMT). For the sake of analysis,
assume that HDC-ABMT costs $150,000 and that this treatment offers a 5% chance
of a complete cure of an otherwise terminal condition. For a 50-year-old woman
who is likely to live 30 more years, this treatment would increase life expectancy
by 1.5 years (30 0.05). Alternatively, suppose that this $150,000 was used for
breast cancer screening, at $100 per screening, for women between 50 and 60 years
old. This would amount to 10 years of mammograms for 150 women. On the rea-
sonable assumption that annual screening for this age group can reduce mortality
164 D. Cummiskey

rates by 40%, this results in an increase of 12 person years of life. Screening as

opposed to HDC-ABMT has eight times (800%) increased efficacy, which is of
course an 800% increase for the lives of real individual people. If you are a 50-year-
old contemplating whether your health insurance policy should cover either screen-
ing or HDC-ABMT, it is clearly rational to choose screening. It is only when health
care decisions are made at the bedside, when someone already has cancer, that a
person would choose to fund HDC-ABMT instead of screening; once you have
cancer, early detection screening provides no benefit. The advantage of a closed
financing system and open deliberations is that allocation decisions are made from
the perspective of a person deciding what to cover as insurance against illness, and
this perspective provides a reasonable and public justification to all for the policy
decision not to fund, for example, HDC-ABMT.
Private for-profit insurance markets lack the sense of solidarity found in public uni-
versal health care systems. Profits transform the relationship, and cost-effective alloca-
tion decisions are perceived as serving the bottom line of corporate interest rather than
overall patient interest. Rather than a public decision made in the name of a common
and shared interest, we have a private market decision denying potentially life-saving
care (or alternatively, a decision to cover a procedure that is less cost-effective and not
in the long-term interest of all). In an NHS system, the decision is not distorted by
profits but it is still probably made by distant government officials (government
bureaucrats, as they say). Social insurance funds are managed by boards representing
patients and their employers, and thus are most closely representative of the perspec-
tive of persons deciding what to cover as insurance against potential illness.
Both employees and employers want to maximize health outcomes and mini-
mize the costs, which inevitably cut into paychecks. Clearly the more that goes into
the health care fund the less is available for take-home pay. Indeed, the overall
employment compensation package (wages and benefits) is generally balanced in
different countries with different rates of employee and employer contributions.
The less (or more) that employers contribute directly to health care funds, corre-
spondingly more (or less) is the direct employee pay; i.e., if salaries are higher, then
employer fund contributions are lower, and if fund contributions are higher, salaries
are correspondingly lower. Overall compensation packages remain roughly equal
across European Union countries with social insurance.
As a final point, social insurance systems can include complete freedom of choice
in health care providers and funds. On the other hand, the United States private
market often denies coverage or increases deductibles for out of network providers,
and thus restricts patient choice. Furthermore, despite the for-profit market in the
United States, patients actually have little market choice or ability to shape benefits
and costs. Insurance packages are so complex that employees must defer to
employers and insurers, and in most cases they just accept the coverage offered.
Private for-profit insurance funds are not run by managers representing employees/
patients and employers, and by design must focus on profits to stay financially viable.
On the other hand, choice and competition between social insurance funds can
introduce market forces that drive efficiency and quality (Paton 2000; Busse 2000).
The quasi-public status of social insurance funds provides an interesting mix of
Health Care Justice: The Social Insurance Approach 165

public and market characteristics. The lifeblood of private insurance is profits. Social
insurance can provide market forces focused exclusively on efficiency and health.
The life and health of the patient, not the corporation, come first; is it thus surprising
that the mortality and morbidity rates are better in countries with social insurance?

The PublicPrivate Distinction Reconsidered

It is actually a mistake to think in terms of pure models of either private or public

health care delivery systems. The United States health care system, for example, is
a mixed system with government expenditures of approximately 46% and private
expenditures of 54%. The United Kingdoms NHS, in contrast, accounts for 86%
of health care costs with 14% private expenditures. The Canadian single-payer
system accounts for 70% of health care costs. Chinas communist system is sup-
posed to guarantee a low level of health care for all through a publicly funded sys-
tem of clinics and hospitals. The Chinese public system accounts for 38% of
expenditures and is supplemented by a 62% private market. Indias national health
care system primarily funds health care through subsidies to health care facilities
that offer low-cost or free care to patients. In India, however, the universal health
care system accounts for only 17% of expenditures and private expenditures
account for 83% of health care costs.6

Government and Private Health Care Expenditures

UK 86% government 14% private
Canada 70% government 30% private
USA 46% government 54% private
China 38% government 62% private
India 17% government 83% private

If over 80% of health expenditures are private, it is reasonable to conclude that

the legal entitlement right to health care in India simply does not provide reasona-
ble and secure access to health care for all. Indeed, on the basis of these statistics,
and the per capita government expenditures (India $16 per capita and the USA
$2,725 per capita), the United States seems to do a better job than India in actually
securing an expansive and effective right to basic health care. Indeed, the United
States government also spends substantially more per capita on health care than
Canada ($2,215 per capita) or the United Kingdoms National Health Service
($2,209 per capita)despite the fact that it does not provide universal coverage.

6
The statistics are from the World Health Organization and these figures are from 2004 in
international dollars. See http://www.who.int
166 D. Cummiskey

Theses statistics do not tell the whole story on the ground, but they do suggest that
we need to focus on the more complex mix of public and private financing of health
care. Canadas single-payer system is supplemented by a 30% private market.
The United States private market is supplemented by a 45% government NHS.
Consequently, we can say that the United States health care system is 45% national-
ized and the Canadian single-payer system is sustained by 30% private for-profit
market. It is thus a mistake to simply contrast the supposed market-based system in the
United States with national health care systems. The important question is whether the
publicprivate mix actually provides secure access to health care services.
The health care systems of most countries include a complex combination of
public and private insurance. The social insurance health care systems of France
and Germany, according to 2004 WHO figures, divide expenditures at about 77%
government and 23% private, and Japan divides expenditures at 81% government
and 19% private; but these numbers are misleading.
As we have seen, these social insurance systems are largely employment-based
systems funded by employer and employee contributions. What this means is that
for France and Germany, 77% of expenditures flow through the nonprofit health
care funds; but not in the more simple form of a single-payer nationalized health
care system like that found in the United Kingdom or Canada. The health funds are
instead quasi-public, independent, nongovernment organizations, and they are only
partially funded by general tax revenues.
Similar to private market insurance systems, social insurance systems are largely
funded by employer contributions and employee premiums. For example, in Japan
in 19901991, the employee premiums and employer payroll taxes funded 56% of
health care expenditures (as opposed to only 32% in the United States) and public
government expenditures in Japan were only 31% (as opposed to 45% in the United
States). Out-of-pocket payments accounted for the remainder of private expendi-
tures (Japan 12% and United States 22%).7 In other words, in 19901991, non-
government expenditures in Japans social insurance system were 68% of total
expenditures, as compared to 54% in the United States. Similarly, in Germany the
employment-based social insurance system accounted for 57% of all expenditures
(covering 88% of the population). Nonstatutory private financing accounted for
25% of expenditures. So, nongovernment expenditures in Germanys health care
system account for over 80% of total expenditures.
The French system has a complex financing system of employer and employee
contributions directly to particular funds based on wages, and an additional gen-
eral social contribution (GSC) based on total income. The GSC is in some ways
more like a general tax, but it is earmarked for social health insurance and thus
maintains a clear connection between health care financing and benefits. The funds

7
Victor Rodwin, Japans Universal and Affordable Health Care: Lessons for the United States?
(with the assistance of Llyn Kawasaki and James Littlehales) New York: Japan Society, 1994.
http://www.nyu.edu/projects/rodwin/lessons.html
Health Care Justice: The Social Insurance Approach 167

themselves are quasi-public funds with independent managers. In France, 74% of

funding is employer/employee-based, with only a 4% general government share.8
There are, however, large co-pays in the French system (with government subsidies
for low-income families) and also limits on benefits. As a result, increasingly social
insurance is supplemented by a complimentary private insurance plan. Indeed, in
2000, 86% of the French population purchased supplementary insurance coverage
and this additional market accounted for 12% of total health care expenditures.
Another 10% was financed by direct out-of-pocket expenses for a total of 22%
additional private costs.
In 2003, 70% of the Swiss also purchased private insurance to supplement the
mandatory social insurance plan. The total costs of private insurance (11%), out-of-
pocket costs (28%), and other insurance amounted to almost 40% of health care
expenditures. Although 60% of Swiss expenditures flow through the mandatory
health funds, once again only 25% is funded by general tax revenues with the
remaining 35% funded by employer/employee contributions.9
We have seen that in many important respects, social insurance schemes resem-
ble the United States employer-based private insurance system. In addition, they
also typically have a substantially smaller government-based national health care
system than that found in the United States.
Health Care Funding Source for USA and Social Insurance Systems
USA 32% employee/employer 22% private 46% government
Japan 56% employee/employer 22% private 32% government
Germany 57% employee/employer 25% private 10% government, 8% other
France 74% employee/employer 22% private 4% government plus other
Switzerland 35% employee/employer 40% private 25% government plus other
(Private costs include out-of-pocket costs and supplemental private insurance. Other
includes alcohol, cigarette, and taxes on pharmaceutical companies.)

Private Markets and Social Insurance

Social insurance funds are quasi-public, nonprofit organizations, and these charac-
teristics, of course, make the social insurance model fundamentally different from
a private for-profit insurance market. But from the point of view of the employees
pocketbook, there is no significant difference in how these two systems are funded.
The difference is in the resultssocial insurance funds are simply more likely to

8
France and Germany statistics are from the European Observatory, Social Health Insurance
Systems in Western Europe; p. 106.
9
Banafsheh Siadat and Michael Stolpe, Reforming Health Care Finance: What Can Germany
Learn from Other Countries? December 2005; p. 7, 1314: http://www.uni-kiel.de/ifw/pub/
kepp/2005/kepp05.pdf.
168 D. Cummiskey

be responsive to patient and employer interests in quality, costs, and efficiency,

rather than to profits and stock prices.
Indeed, the French social insurance system also incorporates fee-for-service pay-
ment of doctors and unrestricted freedom of provider choice for patients.10 It is thus hard
to make sense of the common, too simple-minded contrast between United States mar-
ket-based and French socialist medicine. The French, German, Swiss, and Japanese
socialist systems have significant free market dimensions (perhaps more so than the
United States), and the United States market is supplemented with one of the largest per
capita National Health Systems (i.e., Medicaid and Medicare) in the world.
As we have seen, the statistics on public and private funding are confusing because,
in social insurance systems, the public share is funded primarily by employer premi-
ums and direct payroll employee contributions, rather than general tax revenues; in
addition, the public health funds are not run by the government. In the United States,
employers and employees also pay for health insurance directly, but the funding goes
through a private for-profit, insurance market instead of a quasi-public, nonprofit, social
insurance fund. Social insurance schemes do typically mandate universal coverage, but
the health care delivery system is not run from the top down by the government, and it
is not funded from the top down with general tax receipts. Instead the health care system
is organized into many health care funds that are run by boards selected by employees
and employers. Although there is significant government oversight and regulation of
funds, as WHO surveys of satisfaction with the heath care system indicate, the fund
boards tend to be responsive to the concerns of the members and sensitive to the
demands for affordability, efficiency, and efficacy.
All advanced health care systems are expensive. It is clearly simply false to
describe health care as free in either NHS or social insurance countries. NHS
systems are financed by general taxation and thus citizens pay for health care when
they pay taxes. The quality of care and access is strongly influenced by government
spending on health care, which is limited by tax revenues. If an NHS system
increased national spending from 8.1% of gross domestic product (GDP) to the
United States spending level of 15.4% of GDP, this would surely have an over-
whelming effect on access and services. Since social insurance systems are funded
more directly by employers and employees, they are no more free than is private
for-profit market insurance. However health care is funded, it costs real money, and
the particular amount of money is a percentage of the GDP that is not spent on other
things. It is an advantage of social insurance that the link between cost and benefit
is direct and transparent, but health care is not free. Health care spending in France
is 10.5% of GDP, and in Germany it is 10.6%. Social insurance systems may spend
a greater percentage of GDP on health care than NHS systems, but this is the result
of a public system that sets costs and determines benefits. The higher spending may
be directly related to the tighter connection between financing and benefits, and
thus the perceived value of better health care. On the other hand, the nationalized system
in Canada spends 9.8% of GDP, and the Italian NHS is the second-ranked health

10
The European Observatory on Health Systems and Policies Report, Health Care Systems in
Transition: France 2004; p. 14.
Health Care Justice: The Social Insurance Approach 169

care system in the world while spending only 8.7%. Japans social insurance system
has the best health outcomes with spending at only 7.8%. It is thus hard to draw any
tight correlations between spending levels and overall quality. What is clear is that
high-quality health care services are never free.
Some argue that employment-based social insurance systems burden employers
and weaken business competitiveness. This view is probably a mistake. First, if
employment-based insurance is mandated for all businesses, as it is in a social insur-
ance system, then there is no competitive disadvantage to any one business. Second,
if social insurance leads to better health outcomes, this directly benefits employers
with less lost time and lost productivity due to illness. This is one of the reasons that
employers in Germany first supported, and why employers in all social insurance
countries continue to support, employment-based social insurance plans. It is in the
common interest of all employers to have a standard health care benefits package at
a set cost. Third, if benefit packages are set nationally or across broad regional funds,
employers do not have to negotiate with particular insurers over annual premiums and
benefits. Managers of social insurance funds represent employees as a class and
employers as a class and set a common benefits package for all. Contribution rates
are often set nationally and progressively as a percentage of income. Additional pri-
vate insurance coverage can be purchased by individuals, if they so desire. Fourth, if
there is a national system of risk-pooling, the premiums and costs to particular
employers are not affected by the annual risk assessment of private insurers. More
consistent health care costs allow for more reliable long-term planning and capital
investment. Finally, if health insurance is not tied to a particular employer, the market
in labor will be more fluid and this should benefit employers and employees alike
with a more productive and competitive work force. In all of these ways, a social
insurance system is significantly better for business than a private insurance market.
In the United States, one of the many problems with the health care system is the
economic burden on employers and businesses. There is also always the risk in a free
market system of a race to the bottom where employers have incentives to drop or
weaken health care benefits to stay competitive with others businesses that do not
provide insurance. The result is a Hobsons choice between an inability to compete
with competitors, if reasonable health benefits are provided, or providing no health
benefits, with worse health outcomes for employees, less employee satisfaction, and
negative public relations. Neither choice is attractive. As a result, to create an equal
business playing field and prevent the race to the bottom, many employers, including
large low-cost business like Wal-Mart, have joined with workers to support compre-
hensive health care reform that includes universal coverage.11
At the core of national health care or social insurance is a sense of social solidarity
manifest in a commitment to cover the heath care of all. Some argue that by adding
deductibles and co-pays, the sense of social solidarity that is expressed by universal
health care coverage is undermined. There is room for debate and disagreement

11
New York Times, Business, November 13, 2007. A Health Plan for Wal-Mart: Less Stinginess by
Michael Barbaro and Reed Abelson http://www.nytimes.com/2007/11/13/business/13walmart.
html?ex=1196139600&en=af3ed9092bbffcc4&ei=5070&emc=eta1.
170 D. Cummiskey

about the wisdom of deductibles and co-pays as mechanisms to help control costs.
Assuming, however, that they are justified on overall costbenefit grounds, they
need not offend justice and equity. As argued at the outset, the right to health care
requires that access to health care be socially secured. As long as the deductibles
and co-pays are reasonable and affordable to all, they do not threaten secure access
to health care services. It is important to have deductibles and co-pays for the poor
either waived or government paid, but for those who can afford to pay, how can it
offend justice to have most payments through payroll and some payments at the
point of service? Indeed, the total cost to the individual should be less if the initial
assumption of cost-efficiency is accurate. If no one is made worse off, and indeed
all are probably better off, then there is no violation of justice here.
Private supplemental insurance also raises concerns about the justice of a two-tiered
health care system. There are two kinds of supplemental private insurance: (i) one pro-
vides insurance coverage for procedures or costs that are not covered by national or social
insurance, and (ii) the other provides coverage for procedures and services that are cov-
ered by the national or social insurance. The reasons for this complementary coverage
include avoiding waiting lines for public services or upgrading service through more
luxurious private hospitals.
The first kind of private insurance, providing additional coverage, is not controver-
sial. The second form of supplemental coverage is more controversial. A health care
system that incorporates the first kind of supplemental insurance but prohibits the
second kind of complementary private care essentially enforces equity by prohibiting
private coverage of basic health care services, but it permits purchasing private insur-
ance for additional services or to cover co-pays and deductibles. An analogy in public
education would be a system that prohibits private schools from replacing public
schools, but allows private tutors or other educational options that supplement public
education. Since such a system restricts freedom of choice, it needs to be justified by
some demand of justice or utility. If the private market does not make anyone worse
off (i.e., if the benefit to some hurts no one), then it is not a violation of justice. Does
the addition of a private system, offering services that are otherwise covered by the
public universal system, make anyone worse off?
With private school education a case can be made that the initial educational ineq-
uity can result in a long-term competitive advantage, undermining equality of oppor-
tunity. Nonetheless, private schools are permitted. We will not here explore why this
is so and whether it is justified, all things considered. The case of health care is dif-
ferent. A better private hospital room, for example, is purchased perhaps with greater
wealth, but it is not the source of a competitive advantage. In general, if society allows
significant inequalities in wealth, these inequalities buy better housing and cars and
toys. Similarly, private health care allows some to spend their money on private hos-
pitals or providers that they think are worth the extra costs. If inequalities in wealth
are justified, why cant it be spent on better health services (i.e., services that go
beyond the basic health care services due to all), rather than yachts or penthouses?
One objection to private health insurance is that it enables the better off to jump the
queue (or line) and avoid waiting times for access to health care procedures, a consequence
Health Care Justice: The Social Insurance Approach 171

that seems unfair to many. Two points here. First, if the queue is unacceptably long so that
it is a threat to health, then this is a threat to basic health services and needs to be
addressed directly with increased funding and access. In fact, long wait times are
more characteristic of NHS systems than social insurance systems.
I suspect this is due to the greater responsiveness to patients of social insurance funds
and a greater willingness to directly fund adequate health care. On the other hand, if
adequate health care is secured by the public system, and the wait-lines are the result of
public funding decisions, then the objection to jumping the queue is merely an objection
to jumping to the front of the line. But people using the private system do not jump to
the front of the line; they jump out of the line and switch to the private market, giving
up their spots to others. They also freely add more money to the overall health care sys-
tem through private contributions over and above the tax or employment-based contri-
bution already made. By using private health care, they pay for and support the public
health care system that they do not use. This shortens the lines for public services for
others and so how is this unfair? In addition, in many countries physicians must work
primarily in the public sector with private practice as a supplement. If this is so, the pri-
vate sector also directly increases the income of medical personnel without raising
overall taxes. So, even in systems with significant wait-lines, it is not clear that the addi-
tion of a private system hurts anyone and it may also be beneficial overall.
One additional important issue here is whether the private system drains person-
nel from the public system thus causing a greater shortage of providers. This is most
likely an issue in systems that are underfunded generally, but the problem can also
be addressed through regulation requiring public service of all private physicians.
The question of justice, however, should be focused on the overall impact of the pri-
vate system on the universal public system and not on the individuals opting for
more expensive private care. If the public system is adequate, and secures the right
to health care for all, then an additional private system does not offend justice.
One last complication in judging these matters is the difficulty of specifying
the basic health care package that is due to all. Clearly, countries with greater
overall wealth and more developed health care systems also have an expanded
sense of what is due to all. As an objective matter, one can look to see which
interventions have the most cost-effective impact on morbidity and mortality
outcomes as one indicator of relative importance. This is just a start, however, and
many other considerations complicate these judgments. When benefit packages
are set through a deliberative democratic process, as they often are in social insur-
ance systems, we have at least a procedurally just system for setting priorities.

Poverty and Public Health

In developing economies, where vast wealth cannot be spent on hi-tech hospitals,

public health measures are clearly the most important investment in the health of
the people. Clean water, adequate sewage treatment facilities, adequate nutrition,
172 D. Cummiskey

and immunizations have the largest impact on mortality and morbidity. To take one
example, in Tibet over the last 50 years infant mortality rates have dropped from
the extremely high level of 430 per 1,000 in 1951 to 35.3 per 1,000 by 2000. Life
expectancy for Tibetans increased from 36 years to 62 years since the 1950s.12
These results are due primarily to general public health efforts. In countries with
serious poverty, nothing can fight chronic poverty and affect public health as much
as free public schools with free lunches, clinics, and immunizations. Education
helps break the cycle of poverty; free lunches help fight malnutrition and keep kids
coming back to school; and clinics and immunizations directly fight illness and
disease. In developing countries, broad public health measures and universal
education should be the focus. In the context of serious poverty, more expen-
sive biomedical interventions simply cannot be the first priority of the national
government.
As countries develop and markets and employment expand, however, private
insurance markets also take off and are available for the emerging middle classes.
I suspect in the context of free markets, the emergence of a two-tiered health care
system is somewhat unavoidable. Given the clear advantages of social insurance
systems, we can expect that laws and regulations that promote social health insur-
ance funds through mandatory employment-based health insurance are likely to
mitigate, and, over time, undermine the degree of inequality in access to health care
services. It is an advantage of a social insurance system that it can in this way build
a broader health care infrastructure on the backs of a growing employment base.
Indeed, this is the history of social insurance in Europe; perhaps we can learn from
Europes success.

Conclusion

We have seen that universal health care coverage through social insurance has many
of the advantages of private market insurance without the disadvantages. The
debate on health care justice needs to focus on social insurance and avoid the false
dilemma of having to choose either national single-payer health care or the private
for-profit insurance market.13

12
The United Nations Economic and Social Commission for Asia and the Pacific: http://www.
unescap.org/esid/psis/population/database/chinadata/tibet.htm. For a general health analysis, see
Zang T. Physical Quality of Tibetan Population, China Population Today vol. 34, August 1997,
pp. 1112: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids
=12321518&dopt=Abstract.
13
I am grateful to all of the members of the Colby, Bates, and Bowdoin (CBB) London program
on Medical Ethics and Health Care Policy in the UK and US during the Winter/Spring term of
2003. I have also benefited from working with John Butos on libertarianism and the right to
health care.
Health Care Justice: The Social Insurance Approach 173

Health Care Statistics Cited

Household Incomes of the (47 million) Uninsured in the USA

Under $25,000 14.6 million
$25,00050,000 15 million
$50,00075,000 8.3 million
$75,000 or more 8.7 million

Employment Status of the Uninsured in the USA

26% unemployed, 28% part-time jobs, 46% full-time jobs
Businesses with 10 or less employees: 26% uninsured
Businesses with 100 or less employees: 21% uninsured

Government and Private Health Care Expenditures

UK 86% government 14% private
Canada 70% government 30% private
USA 46% government 54% private
China 38% government 62% private
India 17% government 83% private

Health Care Funding Source

USA 32% employee/employer 22% private 46% government
Japan 56% employee/employer 22% private 32% government
Germany 57% employee/employer 25% private 10% government, 8% other
France 74% employee/employer 22% private 4% government plus other
Switzerland 35% employee/employer 40% private 25% government plus other
(Private costs include out-of-pocket costs and supplemental private insurance. Other includes
alcohol, cigarette, and taxes on pharmaceutical companies.)

Health Care Spending as apercentage of GDP; Per Capita and

Government Per Capita (Figures from World Health Organization)
USA 15.4% $6,096 $2,725
Switzerland 11.5% $4,011 $2,347
Germany 10.6% $3,171 $2,440
France 10.5% $3,040 $2,382
Canada 9.8% $3,173 $2,215
Italy 8.7% $2,414 $1,812
UK 8.1% $2,560 $2,209
Japan 7.8% $2,293 $1,864
India 5.0% $91 $16
China 4.7% $277 $105
174 D. Cummiskey

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Eurohealth vol. 6.4: 2934.
Cummiskey, David. (2006) Confucian Ethics: Responsibilities, Rights, and Relationships, Eubios
Journal of Asian and International Bioethics vol. 16 no. 1.
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Journal of Medicine vol. 314.21:13801383.
Eddy, David M. (1991) The Individual and Society: Is There a conflict. In JAMA, vol. 265.11;
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Ihara, Craig. (2004) Are Individual Rights Necessary? In Confucian Ethics, ed. Shun K.L. and
Wong D.B. Cambridge: Cambridge University Press.
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Paton, Calum R. (2000) Analysis of Market Reforms in Europe, Eurohealth vol. 6.4:2934.
Pogge, Thomas. (2002) World Poverty and Human Rights: Cosmopolitan Responsibilities and
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Rodwin, Victor. (1994) Japans Universal and Affordable Health Care: Lessons for the United
States? (with the assistance of Llyn Kawasaki and James Littlehales) New York: Japan
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Siadat, Banafsheh and Michael Stolpe. (2005) Reforming Health Care Finance: What Can
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Zang, T. (1997) Physical Quality of Tibetan Population, China Population Today vol. 34: 1112.
Investments, Universal Ownership,
and Public Health

Henrik Syse1

Abstract This chapter examines the role of investors, and asks whether they may
be able to affect positively international public health. It is often said that most
investors primarily take a short-term profit perspective. This chapter introduces
the role of universal ownership by large fund managers (mutual funds, retirement
funds, and sovereign wealth funds) around the world. Ethics and long-term self-interest
can here work together as an engine for positive social change.

Keywords Ethical investing, mutual and sovereign fund management, globaliza-

tion, Norway

Introduction: Lifting the Market

Wherein lies the link between financially motivated investments and public policy
questions such as protection of the environment, social justice, and public health?
Should investment managers, whose main job it is to safeguard financial returns,
care about, or try to influence, the way in which their investment objects (most
notably, the companies in which one they own stock) impact on society?

1
This article is based on an article published in Corporate Governance, vol. 15, no. 3, 2007, 427
437 (Gjessing and Syse 2007). I am grateful to my coauthor Ola Peter Krohn Gjessing for his
major contributions to that article, many of which (including several formulations and references)
are carried over into this article. However, I take full responsibility for the views of the present
article. Materials from the previous article are being used with the permission of the original pub-
lisher. Thanks to editors Jim Hawley and Andrew Williams as well as the editorial staff and referees
for Corporate Governance for their valuable input into the previous article, and to the referees for
this book for equally valuable suggestions. While this article describes some of the work and
philosophy of Norges Bank Investment Management (NBIM), it presents the views of the author,
which are not necessarily the same as the official policy of NBIM. The final work on this article
was done at the International Peace Research Institute (PRIO), Oslo, and I am grateful for the time
and financial resources offered me there.

M. Boylan (ed.) International Public Health Policy and Ethics, 175

Springer Science + Business Media B.V. 2008
176 H. Syse

Given the division of labor, morally and legally, that exists between legislative
authorities, companies, civil society, and financial institutions, it is by no means
clear that the financial institutions (nor the individuals and institutions who invest
their money through them) have a major responsibility for social side-effects of
those investments. Indeed, the worlds largest philanthropic endowment, the Gates
Foundation, initially replied to charges of irresponsible investing that it was not the
job of the investment side of the organization to further the goals of the charitable
endowment.2 Investments are there to generate returns, not to do good per se.
Furthermore, investors with many small holdings (which is typical of pension
funds, reserve funds, and endowments) can do littleor so they often sayto
influence their investee companies in any significant way.
However, as the Gates Foundation itself has also admitted, the picture is not as
simple as that. Investors, even those with small and widely diversified holdings, do
have ownership rights that they can usesuch as voting their shares; voicing their
opinions at general meetings; requesting information from, and meetings with,
company representatives; or communicating with standard setters and authorities
about the rules of the market place. Furthermore, widely diversified investors such
as pension and reserve funds often have much in common, making up for the
limited individual size of their holdings. The commonalities between them are not
least reflected in the long time horizon of such funds: they plan to be in the markets
for many decades, often with a wide and relatively stable market exposure. They
are what we often call universal owners: they own not only slices of companies and
sectors, but they in essence own a slice of the whole world market, and they plan to
do so for a while. This means that, aside from whatever charitable or moral interest
in social and environmental questions that individual fund owners or managers
might have, a financial portfolio interest dictates that one should factor in the link
between ones investments on the one hand and the external market effects of the
actions of ones investee companies on the other.
This reasoning lies at the foundation of the ownership policies of Norges Bank
Investment Management (NBIM), where this author used to be Head of Corporate
Governance. NBIM typifies the kind of universal owner that increasingly popu-
lates the global market place. Total returns for such investors will in the long run
most likely be impacted by a number of factorsoften beyond the traditional finan-
cial and corporate governance agenda. Therefore, a similarly wide spectrum of
issues should be on the radar screen.
In this article I will discuss how the concept of universal ownership can be of
help in a process to define a rational governance (or ownership-rights) strategy
for investors, which could include public health and similar public policy issues.
Let us first make the following point clear: Universal ownership is about the fac-
tors influencing absolute returns, that is, actual returns in the form of (inflation-
adjusted) surpluses or deficits of the portfolio as a whole, as well as of those parts of

2
See, for instance, the Los Angeles Times story on January 7, 2007, http://www.latimes.com/news/
nationworld/nation/la-na-gatesx07jan07,0,4205044,full.story?coll=la-home-headlines. The Gates
Foundation has later said that it would review its investment guidelines and policies.
Investments, Universal Ownership, and Public Health 177

the market that influence the portfolio. This is important to remember, because abso-
lute returns are largely irrelevant to the many players in the investment community
who are mandated solely to produce relative returns, meaning they are measured
relative to a predetermined benchmark or index, and they are instructed to beat the
market, meaning the index or that part of the index against which they are measured.
The special features of active universal ownership as a performance-generating activ-
ity warrant the deviating target of absolute returnsor in simpler words: lifting the
entire market, often with a long time horizon (and thus a certain amount of patience),
rather than just beating an investment target for a given, shorter period. This point is
mentioned here to remind the reader that investment policies that aim to increase the
overall profitability, functionality, and legitimacy of the wider market (i.e., increase
the absolute returns) are not necessarily commonplace to investment professionals.
Yet they are increasingly becoming a familiar part of the core thinking within the
investment community. This is what we will now delve into.
The concept of universal ownership seems to have become relatively well estab-
lished, as evidenced, for instance, by contributions to several recent conferences
and publications.3 There is a growing literature on the topic, fueled by among others
the inventors of the concept, Robert A.G. Monks and Nell Minnow.4
Universal ownership addresses the economics of well-diversified investment port-
folios, drawing on now well-understood lessons from welfare economics, as explained
by Nobel Prize-winning economist Joseph Stiglitz and others.5 Monks draws on these
insights into market failure, and adds: nothing is external to a global shareowner.
Institutions having investments in all countries have virtually no incentive to permit
environmental and hiring practices in the poorest countries that can only have the
impact of competing with their own investments elsewhere.6 The same can be said
of defying competition laws (or even fighting their very existence) or permitting non-
optimal corporate governance practices that may not concern the investor financially
speaking in each and every case, but which represent risks to accountability and hence
to the prospects of performance in the broader equity market.

The Impetus Behind Active Ownership

For many pension funds and similar funds, active ownership was until quite
recently not prioritized highlyto the extent it was considered at allprimarily
due to the costs of exercising ownership rights, combined with the small individual

3
See, for instance, www.stmarys-ca.edu/fidcap/about-csfc/Overview/CG_Fid_Cap_UO.html, www.
corpgov.net, and www.mercer.com/pressrelease/details.jhtml/dynamic/idContent/1246780. See also
issue 3 of vol. 15 of the journal Corporate Governance (which includes Gjessing and Syse 2007).
4
For instance, Robert A.G. Monks discusses the special hallmarks of what he calls The New
Owners in Monks (1998). For recent contributions, utilizing the vantage point of the institutional
investor, see Thamoteram and Wildsmith (2006), and Gjessing and Syse (2007).
5
See, for instance, Stiglitz (2000).
6
Monks (2001, 105; emphasis in original).
178 H. Syse

holdings often held by such investors in individual companies. That position has
over time been challenged by several factors.7
First, there has been a growing expectation among the public that funds of a large total
size take ownership seriously, as a matter of moral as well as financial responsibility.
Second, there was the occurrence of major scandals, such as Enron and
WorldCom, which led to doubts about whether the owners had been looking after
their investments in a prudent way, and whether owners had been active enough in
stressing the basic moral and legal expectations that managements and boards must
always be held to by their owners.
Finally, as many pension and reserve funds have grown in size, the question
ofand debate aboutwhat constitutes the most prudent form of long-term investing
has forced active ownership, encompassing environmental, social, and governance-
related issues (often shortened ESG), onto the agenda.
It is important to note, however, that active ownership being financially moti-
vated does not preclude its integration into a more explicitly ethical framework.
The Norwegian Finance Ministry, for instancewhich owns the Norwegian
Government Pension Fundhas specified active ownership and corporate govern-
ance as crucial parts of the fund managers (NBIMs) and the funds ethical guide-
lines. The rationale for this is stated in terms of long-term securing of financial
wealth, with the crucial annexed point that this overall goal cannot be realized
without ethical, social, and environmental sustainability.8 One could possibly argue
that this is disingenuous: How can such attention to social and environmental mat-
ters be ethical in any real sense, if raising the ethical issues is merely instrumental
to an overarching financial goal, namely, long-term securing of financial wealth?
However, the ethical component must be said to be more than merely instrumental
(although it is that, too): it also addresses the right of the funds owners to know
that ethical concerns are indeed integrated into the management of their capital, and
it addresses the legal and moral responsibilities that the funds owners and managers
have towards those who are affected by the fund and its capital. These are independent
and weighty concerns, which in themselves speak in favor of adopting an ethical
framework around fund management. That this also comes across as instrumental
from the fund managers point of viewin other words, that the fund manager
engages in these issues because it is in line with his or her primary task as a fund
manager (namely, to secure returns)does not in this authors view diminish the

7
For a good overview of the change from a passive to a more active view of institutional share-
holder ownership, see Kim and Nofsinger (2004, 7887).
8
See http://odin.dep.no/etikkradet/english/bn.html for an overview of the ethical guidelines. This
web site also includes an overview of the work of the Council on Ethics, which is situated outside
of the fund manager (NBIM) and gives direct advice on ethically based exclusions from the port-
folio. The latter are made with reference not to the sustainability or returns of the fund, but with
reference to the moral problem of being complicit in the worst forms of human rights abuse
through ones investments, however small. The threshold for exclusions is set high, however,
meaning that active use of ownership rights remains the main avenue of influence, since the fund
(given its size and need for risk limitation and diversification) remains widely diversified rather
than positively screened in its investments.
Investments, Universal Ownership, and Public Health 179

weight of the ethical concerns, although it may limit what sort of ethical concerns
the fund manager should raise in his or her specific role as fund manager.

What Universal Ownership Means for the Investor9

The idea that large institutional investors can be characterized as universal owners is
now, as mentioned, quite well established. The basic premise is that the absolute returns
of such funds are strongly influenced by the performance of the global equity market.
For this reason, such a funds long-term financial interest lies with the ability of
the global markets to produce sustainable economic growth, and with the function-
ality of the equity market.10 Thus, for the fund managers it is relevant to explore
how the universal owner concept may influence ownership priorities.
Firstly, we should recognize that free and open markets can facilitate value crea-
tion, resource allocation, and development and utilization of ideas globally. Secondly,
we must acknowledge that grave market failures such as weak competition, widespread
corruption, or excessive harm arising from externalities (such as deteriorating public
health or destruction of the environment) may call on public or collective action. The
prudent universal investor is therefore concerned both with the freedom and openness
of the market on the one hand and its regulation on the other.
Two distinct channels are at an investors disposal. As a shareowner in compa-
nies the investor may exert direct influence over its investees, via formal or informal
mechanisms, alone or together with other investors. As a major market player, the
investor may influence standard setting in the markets, both regarding commonly
accepted market practices and regarding rules and regulations.

Possible Issues for a Universal Owner

Engagement represents cost, possibly high cost. Beyond voting at company general
meetings, therefore, an investor will need to prioritize within the wide range of possible
issues that arise upon the recognition of universal owner interests.
Ideally, a fund manager, managing a universal-owner type of fund, should
rank possible issues according to the likely financial effects of alternative engagement
plans. Such analysis would start with an estimate of the economic importance of

9
In the following, the term investor is used mainly to denote the fund manager or fund manage-
ment institution (i.e., the institutional investor), although it sometimes clearly overlaps withor
even fully includesthe actual end owners of the capital.
10
Strictly speaking, this interest applies to all reasonably diversified equity investors, not only to
investors with shares in thousands of companies. The point is rather that (1) with a very high degree
of diversification, the overall market risk dominates over other risk, and (2) with a high number
of investee companies, internationally well-diversified funds have a global reach extending to a
majority of large-cap companies worldwide.
180 H. Syse

each problem and the damage it inflicts on long-term fund performance, go on to

assess the magnitude of the positive effect that active engagement could have, and
finally evaluate the funds ability to affect such a development.
In practice, such thorough analysis is difficult, as we do not have exact metrics to
assess the welfare economics resulting from the interplay of many market mechanisms,
and we lack good tools to estimate aggregate effects across diversified portfolios.11 But
we know that some market imperfections or failures can have significant financial
importance. For operational purposeswhen designing an ownership policya
realistic approach would be to assess, in rather broad terms, the financial impacts for
equity investors of various hindrances to efficient markets, and combine that with a
judgment of whether the investor is in a good position to influence the matter.
For example, the issue of climate risk can be assessed in this way. Increasing
levels of emissions of greenhouse gases are believed to cause a gradual heating of
the Earths surface, possibly driving rising sea levels, changes to ocean currents,
and changing patterns of precipitation, floods, and droughts. This, including the
possibility of unforeseeable and abrupt shifts in weather systems, may negatively
and severely hamper business opportunities in developing as well as industrialized
regions.12 Greenhouse gas emissions are prominent examples of negative externali-
ties. Thus, the first test is passed: we are talking about serious risk, and possibly
high cost to long-term portfolio performance, caused by market failure.
But what about the second test: are institutional investors in a good position to
bring about change? Fighting man-made climate change must encompass a parallel
deployment of a range of measures. Governments must, among other things, give
businesses and consumers better incentives by imposing corrective costs on emis-
sions, via taxes, emissions trading, or other forms of regulation.13 Authorities may

11
For this (and other) reason(s), corporate governance and related issues (that which we above
abbreviated ESG: environmental, social, and governance factors) are customarily labeled extra-
financials: their effects on investors portfolios are hard to measure in exact financial terms,
whether on a company or a market level. Several fund managers have, however, worked to show
that active investment strategies using corporate governance improvements as a tool to create
excess return are indeed successful. A well-known example is the British investment manager
Hermes Focus Funds (see http://www.hermes.co.uk/focus_funds/focus_funds_home.htm). See
also Strenger (2001) for an overview of the argument that large institutional investors profit from
attention to corporate governance and related issues.
12
The Stern Review on the economics of climate change, published on October 30, 2006, esti-
mates, based on recent scientific evidence, that the aggregate costs of the impacts and risks associ-
ated with climate change could lead to a 520% welfare reduction globally. In contrast, the costs
of action to reduce greenhouse gas emissions to avoid the worst impacts of climate change could
be limited to around 1% of global GDP up to the year 2050. See HM Treasury (2006). Some of
the calculations of the Stern Review have been criticized, but there seems to be widespread agree-
ment about the Reviews main conclusion: that the costs of continuing along a business-as-usual
(BAU) track when it comes to carbon emissions will have greater financial and human costs than
adopting the necessary measures to significantly reduce the emissions.
13
There is, admittedly, still some controversy among governments on the exact contours of the
climate change threat. However, if we accept that there is a need to end the rapid growth in man-
made emissions, there is little doubt that governmental action will be needed.
Investments, Universal Ownership, and Public Health 181

also support better energy technologies, and support safe carbon capture and
storage. All this is mainly in the domain of public policy. Voluntary restraint may
help slightly, but it will certainly not be enough.
The most important aim of climate policy is to achieve stabilization and eventual
reduction of greenhouse gas emissions, with minimum harm done to value creation
and welfare. Speed is of the essence, as emissions are growing considerably. The
main issues at the time of writing include whether major emitters such as the US,
China, and India will come on board for targeting emissions reductions and adopt-
ing core policies, securing binding international cooperation beyond Kyotos 2012
horizon. The question of continually improving, safeguarding, and possibly
expanding the European emissions trading system is also high on the agenda.
It may seem that there is little investors can do herebeyond voicing their general
concern and interestsince it is governments that hold the key to the real solutions.
However, it is an interesting fact that universal owners (i.e., widely diversified inves-
tors with a long time horizon) cannot be certain that portfolio companies do not spend
funds campaigning and lobbying against investor interest, that is, against more proactive
climate policies. Such lobbying, often through powerful industry associations, could
have real influence on policy, and widespread (albeit mostly anecdotal) evidence
indicates that it has.14 This gives room for exchange of views between owners and
managers of companies, especially since interaction with regulators is likely to be
controlled tightly by top management and even the board, the latter being the owners
main interface with the company. So, even if investors cannot directly wield decisive
influence on climate policies, that being the domain mainly of public policy, they may
be in a position to influence the lobbying activities of the firms they own.
One could object to this conclusion by saying that the investor, having few and
relatively light tools only, cannot have real impact on an issue of such huge propor-
tions. But this argument can also be turned around, by saying that engaging onin
other words, addressing critically and openlycorporate lobbying, legitimate and
mainly unregulated as that activity is, is a task that can only be performed with legiti-
macy by owners. Who should talk with companies about this if not their investors?
Hence, there is definitely a room for investor engagement when it comes to a
large public policy issue such as climate change, and NBIM has indeed chosen
dialogue with major carbon emitters about their lobbying strategies and goals vis--vis
legislative authorities as a specific focus area within corporate governance.15
A similar step-by-step analysis can be made with regard to the international fight
against corruption, not least in and around resource-rich countries with weak

14
For instance, former US Vice President Al Gore discusses public campaigning strategies by
people linked to US carbon emitters in Gore (2006, 260269).
15
NBIM has chosen a total of six strategic focus areas so far, two of which are directly related to
social and environmental issues. Company lobbying on environmental issues is one of these, chil-
drens rights and the fight against hazardous child labor is the other. See www.nbim.no, particu-
larly the thematic articles in the 2006 and 2007 Annual Reports of NBIM, for more detailed
information about the focus areas. See also www.nbim.no/Upload/NBIM/CG/Expectations%20ch
ildrens%20rights.pdf for NBIMs approach to the issue of child labor and childrens rights.
182 H. Syse

governance.16 Practices that are prone to corruption can, when seen in isolation, be
beneficial to firms willing to play that game. But at the same time, such practices
have huge negative external effects, represented byin aggregateincreased cost
and risk, lack of fair judicial treatment, inefficient contract awards, and decreased
utility in resource allocation. Corruption and bad governance in many cases play a
role in hampering economic development and prosperity. For a number of reasons,
corruption, together with other factors, helps keep some countries poor, while
idling resources, not least human resources. So, clearly, we are talking about market
failure with severe negative impacts on wealth creation and business opportunity,
and hence on the likely long-term equity returns of the widely diversified investor.
Having passed the materiality test, we should, as we did with the climate risk
issue, turn to the question of whether investors can do anything useful, given the
fact that they have limited resources. There are, of course, several aspects of
corruption that investors cannot directly and immediately change. For example,
practices seen as corrupt by one party may by another party be seen as so ingrained
in a culture that there seems to be neither need nor realistic opportunity for change
overnight. Indeed, in some cases what are seen as deplorable practices in one
cultural context can be seen as absolutely required in another.
However, we can easily presume that many of the investee companies on a daily
basis face the dilemma of how to tackle weak governance and corruption risk in
societies where they operate, since they quite simply lose money because of the
practices involved. Investees in the portfolios of international institutional owners
tend to be larger corporations, often multinationals. The individual behavior of
these companies may have direct impact onand their collective conduct must be
suspected over time to play a role inthe development of a nations culture with
respect to corruption. By, for instance, forming and adhering to industry norms on
anticorruption behavior, groups of companies can indeed play a role. Such norms
can be of mutual benefit to participating firms, given, of course, that outsider firms
cannot easily get advantageous treatment by not adhering to the standards.
A corporations attitude to, for instance, bribery will in many cases be part of the
overall culture of the organization. Some of the really hard dilemmas, involving large
projects or high-value assets, will normally be brought up to a high level of management
for explicit or implicit decision-making. Thus, the top management and/or board will
very likely be aware of the firms overall tactic towards the risk of complicity in cor-
ruption. Since the main contact point of investors with companies is top management
or board directors, they can meet with people who know the attitude of the company
on corruption, and who are in a position to influence it. Inter alia, investors can ask
investees to support and implement relevant anticorruption norms, to ensure that they
have sufficient internal controls, and to demand business partners to apply equal
standards. It is clearly an advantage in such a process that the well-diversified investor

16
An initiative that focuses on this issue, including investor strategies for fighting corruption in
resource-rich countries, is the Extractive Industries Transparency Initiative (EITI). NBIM is a sig-
natory to the Investors Statement of the EITI. (See http://www.eitransparency.org/.)
Investments, Universal Ownership, and Public Health 183

is likely to own shares in a majority of the competitors within each industry, so it can
express the same expectation across the market, regardless of differences as to the
firms legal nationality, listing, or company structure.
Because of their global reach, large institutional investors can thus engage universally
in a way that few other players can, and the best way to do this is by acting together
with similar institutions, creating more force behind the initiatives, and further supporting
the universality of the actions.
It is against the background of these two examples that we now turn to public
health. Public health issues clearly have many of the same features as the examples
used from environment and corruption. (Indeed, some significant public health
challenges today are linked to environmental problems such as water shortages,
climate change, and changing weather patterns.) For example, deteriorating
health and accompanying poorer quality of workforce resources due to rising
levels of Diabetes 2 disabilities in industrialized countries could contribute nega-
tively to the functionality of the affected markets, through rising health costs and
more disabled workers facing early retirement or death. Large-scale disabilities
and mortality due to AIDS in several developing countries are of a nature that also
cripple the financial performance of the affected markets, and that can drive them
to a virtual standstill lasting for decades. Universal owners are directly and
critically exposed to such risks, and cannot regard them merely as elements in a
cynical zero-sum game, but rather as factors working against the long-term financial
interests of the portfolio.
But the second challenge remains: What can investment funds and their managers
do, realistically speaking, to influence markets on public health issues?
To answer this, several lessons should be drawn from the aforementioned examples.
Firstly, investors can monitor and attempt to influence the lobbying activities of
companies. Companies will often, with their immediate financial return in mind,
lobby against measures designed to address public health issues, such as sugar or
tobacco consumption. While investors can hardly persuade companies to lobby
directly against their own financial interestby, for instance, joining in campaigns
to ban the very product they are manufacturingthe investor can certainly dialogue
with the companies about the strategy and legality of their lobbying aims, seen in
the light of widely acknowledged public health concerns.
Secondly, investors can target specific sectors about their impact on public
health by addressing the way in which they manufacture their products or make
them available. A natural example would be the pharmaceutical industry, which
could be challengedsometimes on a sector level, at other times on an individual
company levelto clarify how they can help make life-saving medicines available
to wider segments of a population, in order to help address public health concerns.
While, admittedly, achieving wider access to medicines must primarily be the task
of regulators, not least through patent regimes and taxation policies, companies and
trade associations can be targeted by investors in order to clarify their policies and
show how they live up to their oftentimes lofty company aspirations. Through
increased transparency about how these companies impact on public health, society
at large can more effectively assess and influence their actual policies.
184 H. Syse

It is important to note here that transparency and proper reporting are tools very
much at the investors disposal, since better reporting is often the result of investors
asking for specific information, for instance, in connection with the annual general
meetings of companies. While legal regulations drive some of the public reporting
of companies, investor concerns and pressures are often equally important to the
actual quality and contents of corporate reporting.
Finally, investors can help each other single out companies that significantly
harm public health through their operations, and recommend such companies for
active ownership campaigns or, in the most egregious cases, disinvestment. Large
institutional investors increasingly come together in international forums and net-
works to share strategies and concerns. Increasing the level and intensity of debate
among financial investors about public health issues could help make those ques-
tions part of the mainstream. The United Nations Principles of Responsible
Investment (UN-PRI) launched in 2006 could be a vehicle for such debates among
investors, helping identify issues, sectors, and companies that ought to worry inves-
tors with a long-term, wide market exposure.17

Being a Political Actor Rather Than an Investor?

However, there are also some potential problems when investors take on public
health and similar public policy issues from a universal owner perspective. Let us
briefly address two of them:
Whether activist funds areand should beacting politically is a contentious
issue. In this chapter, I have discussed how the idea and practice of universal owner-
ship can provide insights that can be of value for financially motivated investors.
At the same time, we should be aware that some players in the fund management
world can find it tempting to argue along universal ownership lines in order to make
room for engagement that is motivated more out of societal beliefs than financial
need. While this is not wrong or illegitimate in itself, it is a possible trap for a fund
that wants qua investor to gain access toand have real influence onthe top
levels of the targeted corporations, and it even represents a potential breach of the fiduci-
ary duty of investors. It is arguably the strong business case that makes the investor

17
See www.unpri.org for the United Nations Principles of Responsible Investment. See Waygood
et al. (2006) for an illustrative example of public health concerns integrated from an investment
perspective. The latter case study, from the UK, shows how investors can successfully encourage
companies to adopt better health and safety standards. I should add here (cf. footnote 15 above)
that public health is not a special focus area of the Norwegian Government Pension Fund (or of
NBIM as the funds manager) as of today, since other issues have been focused on more explicitly
in the 20072010 strategy (see www.nbim.no). However, public health concerns are often
addressed more indirectly through voting on resolutions that raise such issues, and NBIM is also
an active part of an investment community that increasingly discusses and raises issues of rele-
vance to public health. Furthermore, NBIMs engagements on child labor and childrens rights
often touch on important public health issues in developing countries.
Investments, Universal Ownership, and Public Health 185

heard in the community of corporations and fellow investors, and raising issues that
are political in nature, without any clear link to a business case (for either the inves-
tor or the company, or both) is likely to reduce the impact that an investor can have.
Furthermore, we could speculate that such potential abuse (or at least different use)
of the universal-owner argument may prove destructive to the long-term viability of
the concept, since the issues raised will no longer be linked to the actual ownership
interest, but rather to other concerns and interests. There is a particular danger here
for a so-called sovereign wealth fund, such as the Norwegian Government Pension
Fund, which invests money on behalf of a national owner. If such an investor is seen
to be an overtly political rather than a business-minded actor, suspicions about the
investors ultimate goals will abound, and regulations to hinder it from having influence
are likely to be introduced.
Admittedly, there is a possibility that truly fiduciary universal-owner strategies
will sometimes be interpreted as political, even when this is unwarranted. This is
likely to happen partly because such investors will sometimes argue within the field
of political debate (both climate change and public health are obvious examples of
this), and partly because the arguments conflict with conventional wisdom that
holds that each investment should be assessed in isolation. This should not scare
investors that are well prepared and have thought their arguments well through, but
the problem must nonetheless be kept in mind.
At the same time, we should note the basic and commonsense point that having
more than only one motivation for ones actions is not in itself wrong. If a company
or an investor finds that a business strategy also fulfils other ideals or aims, includ-
ing political or ethical ones, such motivational overlap can create extra incentives
and even usefully broaden ones business concept. Hence, my point here is not that
investors and their investee companies should be motivated exclusively by business
or financial considerations when addressing public policy issues, but rather that it
is important to be clear and honest about ones task and role as a business actor.
This task and role may very well encompass a host of crucial ethical issues, and
having a strong moral voice is rarely a disadvantage. But if it seems that a more
purely political agenda lies behind or even overshadows ones business case, that
could lead to ethical dilemmas (related to ones fiduciary duty) and also real prob-
lems in being listened to and taken seriously as an investor.18

18
Admittedly, the distinction I am hinting at here between political agendas and ethical issues is
not crystal clear. What I am trying to point to is the difference between (1) particular agendas that
include goals that are neither business-oriented nor necessarily oriented towards the common good
or of those most in need of protection, and (2) agendas or issues that truly speak to the common good or
to the needs of the weakest parties involved, while also encompassing the business case. The former
will, negatively speaking, easily be labeled political (and thus self-interested in a nonbusiness-
related way), whereas the latter will more positively be understood as ethical in a way that does
not conflict with the investors financial mandate and interest. There is clearly a grey area and much
overlap here. For a useful contribution to the debate on constructively integrating the ethics case
and the business case in active ownership and corporate governance, see Solomon and Solomon
(2004, 2329, 187212); for NBIMs approach to integrating ethics into corporate governance,
see Dramer and Syse (2006), and Norges Bank Investment Management (2006).
186 H. Syse

Do Portfolio Arguments Work in Company Engagement?

The other problem to be discussed in conjunction with universal owner arguments

is the following:
The purpose of companies is to set capital to work. What investors, as owners,
ask company management to do is to obtain the highest return possible on the capi-
tal. This is the simple, yet powerful, mission of investment. This does not capture
external effects, and investors may therefore engage with managementboards can
in this respect be seen as part of the managementto try to persuade the company
to take into account not only the return on capital in that company, but also more
complex investor interests, as outlined in this chapter.
But is such engagement credible? I have several times heard of management
complaints that one has to listen to lofty ideals and demands made by investor rep-
resentatives, about whom the management harbors doubts that they have any
authority even within their own investment organization. Are corporate governance
activists within investment organizations merely do-gooders who do their bit to
keep up a nice faade, while othersthe investment professionalsdo the real,
money-making work? More generally, investors must ask themselves whether they
have much persuasive power when on the one hand they hold management respon-
sible for achieving the required rate of return, and on the other hand challenge them
to forgo profitable opportunities for the sake of something the investor, in a discre-
tionary way, characterizes as portfolio interests.
Again, we are in a territory of little empirical evidence, but we know that some
active investors hold as a rule that engagement in order to be effective must to a
reasonable extent be cooperative towards management. Hence, asking management
to divert from profit maximization in order to pursue a portfolio interest of the
investor will be difficult, especially when universal owner arguments are still the
exception rather than the rule.
Being in a company-by-company profit maximization paradigm does not, however,
render the universal owner thinking useless. Diversified owners may still do their
internal analysis and prioritization on the premise that externalities do in several
instances count. Building on this, they can as diversified owners work to create
similar expectations and demands for all the corporate actors within the sector,
field, or area, thus helping create a level playing field that does not demand sacrifices
of some to the advantage of others.19 As investors, they may also define consistency
and sustainability in the value-creating mandates of company management as a
constraint in the search for feasible investment and engagement targets. Finally, if
the investor cannot find strong business arguments vis--vis each individual company
for a case derived from portfolio interests, it may be better to explore alternative
strategies. Surely, pure business arguments are not the only arguments that can
work. When the case is clear, stand-alone ethical arguments can be forceful as such.

19
For a strong argument in favor of universal standards and a level playing field in international
business, see Smeltzer and Jennings (2001).
Investments, Universal Ownership, and Public Health 187

When it comes to public health, the main theme of this book, this is certainly the
case: appealing to ones moral concern for the preservation of human life or for
increased welfarenot against ones investor interest but as part of it, and at the
same time as a stand-alone ethical concern, in line with widely accepted interna-
tional normscan undoubtedly be part of a viable engagement tactic.

Conclusion

This chapter has aimed to show the relevance and possible use of the universal
owner concept as well as some of its limitations, highlighting the arena of public
health as one of several possible areas for fruitful investor engagement. The chapter
is based on a positive belief in the role that institutional investors can and should
play in influencing corporate governance. This potential has just recently been fully
understood. Indeed, pre-Enron, most investors with widely dispersed investments
did not think much about their role as corporate governance actors. Today, when
more than 60% of the US stock market (according to 2005 figures from the
Conference Board, a US business research group) is owned by institutional inves-
tors such as pension funds, many of them with truly long time horizons for their
investments, this avenue of influence must be investigatedand used.
In conclusion we should, first, stress that investors have at least two potential
avenues for exerting influence: company engagement on the one hand, and dialogue
with standard setters such as regulators, stock exchanges, and accounting bodies on
the other. In other words, it is not all about company engagement, but rather
engagement on a wider field.
Second, we should note that there prevailsand should prevaila division of
labor. Investors do not have to act on everything that affects them, as governments
and supranational bodies can be assumed to perform many tasks better and more
naturally. Investors can, however, on certain occasions find it useful to voice core
interests that normally pertain to the realm of governments or public policy, in order
to gather extra momentum for change on issues important to investors.
Third, investors can strengthen their business case through collaborative efforts.
Acting on universal owner insights (e.g., by forging better governance or by
addressing concerns about deteriorating public health) will be beneficial to most
diversified investors. By acting together, investors can extend their reach and
achieve more in each case. There is a possible pattern emerging here: Policy cam-
paigns that are relatively uncontroversial among investors are being executed
increasingly well through broad, inclusive networks, such as the International
Corporate Governance Network (ICGN) and, in the US, the Council of Institutional
Investors (CII). More cutting-edge and slightly less consensus-oriented initiatives
are being run through single-purpose bodies such as the United Nations Principles
for Responsible Investment. As a third category, investors try increasingly to form
informal and more intimate collaboration platforms that can be better suited for
engagement at the single-company level. Such collaborations focused around company
188 H. Syse

engagement are finding varying forms, from commercially offered overlay services
to common efforts and various coordination activities. Given the common goods
nature of many aspects of active ownership, investors are likely to continue to
explore ways of pooling resources in search of increased efficacy.
Although I have in this chapter also discussed a few of the difficulties with the
universal owner argument, I have hopefully shown that the argument can provide
valuable insights and good starting points for an analysis of investor ownership
policies. Actors concerned about public health, or about the relationship between
financial markets and social issues more generally, would do well to factor in the
influence and potential power of serious, long-term investors.

References

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 Part III
Medical Need and Response
Toward Control of Infectious Disease: Ethical
Challenges for a Global Effort

Margaret P. Battin, Charles B. Smith, Leslie P. Francis, and Jay A. Jacobson

Abstract Despite the devastating pandemic of HIV/AIDS that erupted in the early
1980s, despite the failure to eradicate polio and the emergence of resistant forms of
tuberculosis that came into focus in the 1990s, and despite newly emerging diseases
like Severe Acute Respiratory Syndrome (SARS) in 2003 and the fearsome prospect
of human-to-human avian flu, it is nevertheless a time of some excitement over
prospects for effective control of much of infectious disease. Funded by national
and international governmental and nongovernmental organizations (NGOs), private
foundations, and even popular entertainers, large-scale new efforts are under way to
address global killers like AIDS, tuberculosis, and malaria, among others. This mar-
velous momentum can be seen as part of a continuing effort from the time of Jenner
onward. Extrapolating from this, we explore the notion of a comprehensive global
effort for the eradication, elimination or control of infectious disease, with particular
attention to the ethical issues that arise. This is to think big about disease-control
efforts that are now often done in piecemeal ways. This chapter identifies five tracks
along which such efforts need to be pursued: (1) national and international organi-
zations and the development of collective will; (2) epidemiological and health care
infrastructure; (3) scientific development; (4) religious, social, and cultural considera-
tions; (5) legal and social protections for individuals and groups. Each of these poses
significant ethical issues which, we argue, should be viewed in a comprehensive way,
to ensure that practice, research, and policy in each of these areas understands the
person with communicable infectious disease as both victim and (potential) vector.

Keywords Bioethics, infectious disease, communicability, victim, vector, AIDS,

tuberculosis, malaria, global health, developing world

Introduction

Despite the devastating pandemic of HIV/AIDS that erupted in the early 1980s,
despite the failure to eradicate polio and the emergence of resistant forms of tuber-
culosis that came into focus in the 1990s, and despite newly emerging diseases like

M. Boylan (ed.) International Public Health Policy and Ethics, 191

Springer Science + Business Media B.V. 2008
192 M.P. Battin et al.

SARS in 2003 and the fearsome prospect of human-to-human avian flu, it is

nevertheless a time of some excitement over prospects for effective control of
much of infectious disease. Funded by national and international governmental
and nongovernmental organizations, private foundations, and even popular enter-
tainers, large-scale new efforts are under way to address global killers like AIDS,
tuberculosis, and malaria, among others. Legal standoffs over patent rights to
antiretrovirals and other drugs have to some extent been resolved, and pressure is
being exerted for the improvement of infrastructure issues, like clean water and
improved sanitation. Research in the identification of pathogens, as well as in the
prevention, diagnosis, and treatment of infectious diseases, has made very great
progress in some areas, especially in vaccine development and the development
of rapid tests, in pandemic forecasting, and in the establishment of globally coor-
dinated disease outbreak surveillance networks. At last, attention is being focused
on orphan infectious diseases and the so-called neglected tropical diseases. It is,
we think, a moment of growing optimism. Finally, after what has seemed like a
long hiatusroughly since the late 1960s and early 1970s when the then surgeon
general was apparently saying that it was time to close the book on infectious
disease, and concern over infectious disease was slipping out of public view, at
least in the developed worldbroad and publicly visible efforts at control are
now again being made as a central part of the new concern for global health.
Progress, it seems, is in the air.

A Marvelous Momentum for the Control of Infectious Disease

It is important to understand how very recent the new optimism isas we write
this, it is only about seven or eight years old. In 1999, the Gates Foundation
announced that it would contribute $25 million to the International AIDS Vaccine
Initiative (IAVI) to further the development of an AIDS vaccine, and the following
year dedicated $90 million towards control of HIV/AIDS in Africa, especially to
decrease the rates of new infections and maternalchild transmission, and provide
resources and training in palliative care to children orphaned by AIDS (Bill &
Melinda Gates Foundation 2008). The impressive size of the Gates contributions,
together with the fact that they came from a private entity rather than a governmental
organization, contributed to a new optimism that at last something could be done to
try to bring under control one of the worlds most devastating pandemics, one that
echoes the plagues of the middle ages and the 1918 influenza.
In the perception of both the public and of many professionals, this infusion of
money and energy served as the turning point (Cohen 2006, 162167) after years
in which many institutions and governments, including that of the United States,
had done little or nothing to try to stop the AIDS pandemic as a global phenome-
noneven after effective drugs had been developed. The wealthy nations, espe-
cially the United States, had been attentive to issues of HIV treatment in their own
populations and patent protections for their own pharmaceutical industries, but were
seemingly oblivious to the skyrocketing death rate in the developing world and the
Toward Control of Infectious Disease: Ethical Challenges for a Global Effort 193

devastation of an entire continent. HIV control on a global scale seemed impossible.

However, galvanized perhaps by the infusion of both optimism and cash from the
Gates Foundation, within the past decade governments, NGOs, public/private
partnerships, multinational corporations, religious groups, and entertainers have
rushed to contribute to a far more concerted effort to reduce the global burden of
AIDS and with it other infectious diseases as well.
In fact, considerable progress toward the control of infectious disease had been
being made during the decades of the 1970s and 1980s in the development of vac-
cines, anti-infectives, and methods for disease prevention and treatment. With the
emergence of HIV/AIDS on a global scale, the public awakened as well. The World
Health Organization (WHO) had been making tireless efforts over the years, culmi-
nating in the ambitious 3 by 5 program to have three million HIV patients receiving
antiretroviral therapy by 2005. Other foundations as well as Gates had been con-
cerned with global health, like the Rockefeller Foundation; so were many national
and international governmental institutions. Evolving market forces and improved
education also played some role. But the Gates Foundations immense contribution
of private funding to fight AIDS has served as a catalyst, giving focus to many other
efforts, both those initiated beforehand and especially those introduced afterwards.
Governments of affluent countries have become major donors to efforts to improve
global health: the United States, France, Italy, the United Kingdom, Canada,
Germany, the Netherlands, Sweden, Spain, Norway, Denmark, and Russia, ranked by
size of contribution to the Global Fund as of early 2008, but less affluent countries
have also been donors: Romania, Brazil, Mexico, Slovenia, Poland, and Hungary
(The Global Fund, 2008). Funds have poured in from multiple sourcesa total of
some $35 billion, by one estimate, as of January 2006 (Cohen 2006, 162167).
Laurie Garrett, seconded by Paul Farmer, calls this a marvelous momentum
(Garrett 2007) (Farmer and Garrett 2007) towards assistance in global health.
To be sure, this picture of progress and emerging comprehensive global efforts
toward the improvement of global health, and with it the control of infectious
disease, is hardly a fully coordinated or integrated one: efforts by one foundation or
NGO sometimes reduplicate efforts by another, and related but not-quite-parallel
research programs leave gaps where articulation of related efforts might be much
closer. Competition between entities, international tensions, commercial agendas,
and very different styles of research funding and priority-setting make the picture far
from seamlessly smooth. Political agendas sometimes undercut research; research
sometimes violates local custom or understandings of fairness; popular misunder-
standings sometimes block immunization drives and other efforts to control the
transmission of disease. Officials at one organization complain of dominance by
another (McNeil 2008). There have been disappointments and failures: the 3 by 5
program for AIDS and Roll Back Malaria, for example, did not meet their ambitious
initial goals. Only one million rather than three million people were receiving com-
bination antiretroviral therapy for HIV/AIDS in developing countries by June 2005
(WHO/UNAIDS 2005). Roll Back Malarias clear pledge in 1998 to cut deaths from
malaria in half by 2010 was labeled a failure, its principal contributors admitting that
it was acting against a background of increasing malaria burdenthat is, that
malaria deaths were going up, not down. (Yamey 2004, 10861087).
194 M.P. Battin et al.

Furthermore, attention to infectious disease has been patchwork in character,

focusing on some high-profile diseases while ignoring others that cost far more
lives. While AIDS, Ebola, and avian flu fuel widespread fear, some ongoing
endemic killers, such as infantile diarrhea and childhood acute respiratory tract
infections, receive little press and correspondingly little funding or policy attention.
Indeed, Solomon Benatar laments the siloed character of approaches to infectious
disease (Benatar 2005), one disease at a time. Laurie Garrett despairs of stove-
pipe funding: aid that is piped down narrow channels relating to a particular pro-
gram or disease, ignoring broader needs and concerns: she cites as an example the
case in which a government receives considerable support for an antiretroviral
distribution program for mothers and children in a specific area, but nothing else.
The consequence: mothers who are HIV+ receive drugs for their own infection and
to prevent maternal/infant transmission at delivery, but they cannot obtain obstetric
and gynecological care or infant immunizations (Garrett 2007, 2223). Attention to
specific diseases has seemed to be quite unequal: while massive research efforts
have been directed towards development of a vaccine against HIV, with more than
30 candidates currently in the pipeline, no new tuberculosis vaccine has been
developed since 1921, even though the TB bacillus is a technically easier target
than the human immunodeficiency virus. In most developing countries the method
of diagnosing TB is still the same as that used in 1847.
Yet even if not fully coordinated and sometimes seeming to undercut each other,
these disease-by-disease, program-by-program efforts all focus directly or indirectly
on a common goal, the reduction of the global burden of infectious disease. Thus these
varied efforts can all be seen as a sort of mosaic or kaleidoscope of specific efforts
that perhaps all form part of a broader one, coming incrementally into being. The many
programs of research in vaccines and antimicrobials, the various water purification and
public sanitation projects, the various initiatives for the control of diseases from AIDS
to human papillomavirus (HPV)-caused cervical cancer to river blindness, and the
multiple legal and social programs like model statutes and pandemic prioritization
policies contribute to these emerging, newly coalescing global efforts towards the ulti-
mate goal of control of infectious disease, the details of which are being continuously
filled in and modified as the various individual projects are developed and become
more fully integrated. We can think of it as a projection forward of current efforts and
an anticipation of future ones, an ongoing, overall project under continuous develop-
ment. Call this still-emerging set of efforts by a unifying name: a Comprehensive
Global Effort for the Eradication, Elimination, or Control of Infectious Disease.

A Vision for 20202030? A Comprehensive Global Effort

for the Control of Infectious Disease

We want to take advantage of this forward-looking, unifying, optimistic picture of

new progress and reenergized enthusiasm over the last seven or eight years to
examine the ethical questions a genuinely global effort would raise. After all,
Toward Control of Infectious Disease: Ethical Challenges for a Global Effort 195

practical success as the various components of this overall effort move forward
does not entail ethical success, either in their mosaic diversity or as a compre-
hensive whole.
One way to give the notion of an emerging Comprehensive Global Effort
concreteness and urgency is to think about what would need to happen if we were
to try to bring these various efforts to fruition within a given decadefor example,
to imagine implementing it fully within, say, the decade 20202030. A clearly
defined Comprehensive Global Effort imagined as just far enough away to give
some time for coordination and preparation would nevertheless be close enough to
make a real difference to the world today. This is a somewhat visionary approach,
but not just fantasyrather, it is an approach that looks ahead to a future we can
reasonably foresee.
To the degree that such an approach involves extrapolating into the future from
current trends, we can hardly be sure what the conditions and events even in the future
will be, or whether a Comprehensive Global Effort could or will succeed or even
partly succeed. It might work; it might not; or it might be only a partial success.
Elsewhere, we have described what we call the patient-as-victim-and-vector
view, or PVV for short, as a way to think about issues of policy and practice. It
begins with an account of the patientthe person, indeed any personas physi-
cally embedded in a web of disease, a way-station self who is breeding ground
and launching pad for literally trillions of microorganisms, many of which are
benign or crucial to human functioning but some of which are dangerous or lethal,
and involves three intertwined perspectives through which to take account of the
phenomenon of transmissibility of disease: self-views, population-level views, and
hypothetical, Rawlsian-like views (Battin et al. 2008). The normative conclusion of
the PVV view can be stated simply:
Ethical problems in infectious disease should be analyzed, and clinical practices, research
agendas, and public policies developed that always take into account the possibility that a per-
son with communicable infectious disease is both victim and vector at one and the same time.

Using this view of the patient as both victim and vector, we can reasonably foresee
something about the ethical challenges that can be expected to arise along the way
as the Comprehensive Global Effort proceeds, and it is these challenges we wish to
explore here.
A more pessimistic version of the same projection of a Comprehensive Global
Effort despairs of the possibility of ever achieving control of infectious disease or
doing so within a specific period of time. It asks instead what are the crucial
features in delaywhat factors are operating now or might operate in the future
to make such a goal unattainable? Could the fearsome prospect of virtually total
collapse of public health portrayed so effectively by Laurie Garrett in Betrayal of
Trust (Garrett 2001) be inevitable? Could the effects of climate change and global
warming destroy advances in environmental preventatives like vector control, or
could the expansion of warfare and ethnic cleansing, especially that which
employs deliberate tactics for spreading infectious disease, undercut any progress
in disease-control programs? And what ethical failures in disease control are
196 M.P. Battin et al.

becoming increasingly evident, and what ethical objections might be so strong

that they would be sufficient to warrant blocking of any attempt to undertake
comprehensive global efforts?
Leaving these concerns aside for the moment, the optimistic picture we
explore here of an emerging Comprehensive Global Effort for the Control of
Infectious Disease is in one sense an elaboration and expansion of a compara-
tively simple thought-experiment about airport surveillance for infectious dis-
ease, a way of considering what constraints would be acceptable in the effort to
eradicate, eliminate, or control the serious human infectious diseases. This
thought experiment considered the possibility that rapid testing (and treatment)
were available for all the major infectious diseasesand asked whether it
would be permissible to require such testing of everyone before they boarded
an airplane. The inconvenience would be limitedjust a cheek swab, a short
delay (perhaps 20 minutes, perhaps as short as 120 seconds), and of course a
longer delay with treatment if necessarybut the possibility of reducing the
global burden of infectious disease would be immense (Battin et al. 2008, chap-
ter 15). In another sense, it is a projection of the overall direction we discern in
the many somewhat disparate enterprises already under way, a description of an
overall project on which many organizations around the globe have already
embarked. And in yet another sense, casting a Global Effort as highly time-
focused, pursued within the specific decade 20202030, looks very much like
a plan, something we are already embarked upon and should continue
pursuing.
This essays account of a Comprehensive Global Effort can thus be read in at
least three not fully distinct ways. It lies somewhere between a sheer thought-
experiment (What if the serious human infectious diseases could be brought under
control?); a factual account of events that are now taking place (Look at all the
remarkable progress that is going on!); and a practical proposal with a concrete,
dated plan (What would it take to bring the serious human infectious diseases
under control, and to do sothis is the visionary partby the end of the decade
20202030?). The power of a thought experiment is to help identify moral fault
lines (as in our airport thought experiment), and the importance of a factual
account of what is actually going on is to remind ourselves of the very substantial
progress, as well as backsliding, that has been made so far. And the heuristic device
of a time-pressured feature, of imagining the culmination of this Effort in a fast-
approaching, specific, and limited period of timethe decade 20202030empha-
sizes the real-world challenges of global coordination and cooperation, if that is
what would be necessary to bring the serious human communicable diseases under
control. But most important for our concerns here, this chapters broader and far
more realistic exploration of what is afoot in the new marvelous momentum of
efforts to reduce the global burden of disease also involves exploring concrete
moral claims about what would be required to make this immense global effort go
ethically well.
Some authors suggest that the moment for such a project is already past. Robert
Baker, for instance, contends that humankind has squandered the opportunity to
Toward Control of Infectious Disease: Ethical Challenges for a Global Effort 197

usher in a Golden Age of protection from disease (Baker 2007). But that does not
preclude a renewed, reinvigorated, and better-orchestrated effort as a revitalized
attempt, something we see as again under way.
Other global efforts are also beginning to attract at least some measure of global
cooperationfor example, controlling global warming; rescuing endangered species;
securing equitable access to water or establishing water justice; developing alternative
energy sources; managing immigration; controlling drugs; and eliminating terrorism,
ethnic cleansing, and war. But a common goal of the eradication, elimination, or full
control of serious, human-affecting infectious disease may be, as we will consider
later on, both more practicable and less controversial than these others, even though
like them it may involve quite controversial policy initiatives.
In a Comprehensive Global Effort, coordination of effort or at least simultaneous
effort on many different fronts is crucial, since many of the factors that need to be
addressed are highly interrelated with others. Scientific advances accomplish little
without infrastructure improvement, for example, or environmental control.
Institutional cooperation and legal protections are inadequate in the face of
cultural and religious attitudes that vilify carriers of infectious disease as sinful
individuals, or characterize outbreaks of infectious disease as an appropriate
scourge for sinful populations. To think about an emerging, overall, coordinated
globe-wide project is to think big about all the factors across the board that
affect how we might address a challenge to human well-being that had almost
disappeared from ethical dialogue in the late 1960s and early 1970s, before
renewed ethical debate with the emergence of HIV, even though advances like the
development of new antimicrobials and the eradication of smallpox were pro-
ceeding apace. It is such an ongoing project that has now come into view again
with real force, reenergized and far more publicly visible in the last seven or eight
years, and that makes it imperative to think big.

Thinking Big, Both Practically and Ethically

A number of think big efforts toward reducing the global burden of infectious
disease are already under way, practical efforts of a variety of sorts focusing on
social realities and scientific gains. The United Nations Millennium Development
Goals (MDG), for example, represent an effort to think globally about health and
related problems (United Nations 2008). The Gates Foundations Grand Challenges
in Global Health Initiative is also global in scale: it seeks to achieve scientific
breakthroughs against diseases that disproportionately affect the two billion poorest
people on earth, though of course diseases like AIDS and tuberculosis can affect
people everywhere. The Council of Science Editors has organized a global theme
issue on poverty and human development involving more than 230 science and
biomedical journals, focusing among other things on interventions to improve
health among the poor (Flanagin and Winker 2007). These are all invaluable efforts
involving the many, many parts of the overall picture, and they all think big.
198 M.P. Battin et al.

At the same time that practical efforts are converging in the effort to control
infectious disease, there is an efflorescence of efforts to consider the ethical issues
involved. With the exception of those directed to HIV/AIDS, most date from 1999
or later, and recent attention to the ethics issues in pandemic influenza planning has
been particularly extensive. Documents like that from WHO by Coleman, Reis, and
Croisier (Coleman et al. 2007) articulate policies; others, like the American Civil
Liberties Union (ACLU) document authored by Annas, Mariner, and Parmet
(Annas et al. 2008), vigorously critique policies already developed on the basis of
ethical inadequacies. And a major effort has been mounted by the Bill & Melinda
Gates Foundation to look specifically at the ethical issues in the emerging concern
with global health: this is the ethical, social, and cultural program that is funded
under the Grand Challenges in Global Health Initiative, designed to use bioethics
considerations to assess the specific Grand Challenges projects that are planned or
are currently under way (Singer et al. 2008). Elsewhere we document how infec-
tious disease had been left out of bioethics during that new fields formative years
(Battin et al. 2008, chapter 4); now it is moving back in, so to speak, with extraor-
dinary rapidity, making up for a couple of decades of lost time.
However, much of the burgeoning new work in the ethics of infectious disease
employs the conceptual categories of traditional bioethics that were developed
without specific attention to the moral issues in transmissibility. To be sure, this
may be perfectly adequate in addressing issues like caged field trials of genetically
modified mosquitoes, as is the subject of one of the current projects under the Gates
Foundations Grand Challenges program, but the traditional approaches of bioethics
usual ethical framework within which projects are assessed needs, as we argued
there, to be augmented and expanded.
Of course, many writers and theorists already instinctively appeal to both vic-
tim-related and vector-related concerns, but as far as we are aware none have done
this explicitly or systematically in a way that would guarantee that both concerns
would be addressed in any given issue. This is what we have sought to do with our
PVV view. Hence, we like to think of our objective here in exploring the notion of
a comprehensive global project as in concert with, and indeed admiring of, the
many efforts now afoot to explore the ethical issues in infectious disease, but push-
ing them a good step furthera step we believe necessary for morally adequate
reflection on a very broad scale.
What, then, would be involved in a Comprehensive Global Effort for the Years
20202030 for the Eradication, Elimination, or Control of Infectious Disease? We
point to both practical and ethical issues that would arise along at least five different
though interrelated tracks: (1) What would be desirable in the spheres of national
and international policy? (2) What would we need to bring about in terms of epide-
miological and health care infrastructure? (3) What are the most crucial lines of
pursuit in scientific development? (4) What would need to be thought about in
light of religious, social, and cultural considerations? and 5) What would need to
be developed as legal and social protections for individuals? These five are all criti-
cal areas for research and policy development, most of them interdependent upon
each other, and all raising substantial ethical issues we will sketch here.
Toward Control of Infectious Disease: Ethical Challenges for a Global Effort 199

This Global Effort is not to be imagined as starting from zero. On the contrary,
many of the critical areas in Tracks 15 are already well known to participants in
current efforts to address infectious disease across the globe, from researchers and
clinical health care providers to immense organizations concerned with global health.
Indeed, everyone and every organization working in infectious disease participates in
some part of the global project explored here, whether aware of the emerging comp-
rehensive effort or not. It is already in progressindeed, in full swing.

Global Efforts: Results So Far

Can we even imagine a Comprehensive Global Effort for the Eradication, Elimination,
or Control of Infectious Disease? Indeed, in many respects the world is already half-
way there, at least in developed countries. It is important to remember as we entertain
the notion of a Global Effort the impressive list of infectious diseases affecting
humans for which effective vaccines, treatments, or preventive measures have been
developed. Some of these diseases have already been eradicated, eliminated, or
brought under control in the wild, though for many methods for prevention and treat-
ment are known but not available in much of the developing world.
Here is a snapshot taken at the current moment in history of our progress so far in
bringing the serious human infectious diseases under control: it is a shifting picture
and highly variable from one area to another, but a picture of extraordinary achieve-
ment just the same. Some is due to the development of effective vaccines or drugs,
some due to quality-of-life improvements and infrastructure development, some due
to effective preventative measures, and some due to accidents of geography or
environmental change, as with alterations in the ranges of animal or insect vectors.
Here is a partial list of human diseases that have been eradicated, eliminated, or
can be well controlled by vaccines or effective therapies. Among these are:
Smallpox
Leprosy
Plague
Yellow fever
Pertussis (whooping cough)
Syphilis
Diphtheria
Tetanus
Rabies
Measles
Mumps
Polio
Varicella (chickenpox)
Rubella (German measles)
Invasive pneumococcal disease
200 M.P. Battin et al.

Hemophilus influenzae type B

Hepatitis A and B
Meningococcal meningitis
Japanese encephalitis
Seasonal influenza
Other infectious diseases, particularly those common in developing countries, have
effective therapies or methods for control, but these controls have not been widely
implemented. They include:
Tuberculosis
Malaria
Trypanosomiasis (sleeping sickness, Chagas disease)
Cholera
The neglected tropical diseases for which effective oral treatments are already
known (Reddy et al. 2008, 19111924):
Roundworm
Whipworm
Hookworm
Schistosomiasis (snail fever or bilharzias)
Elephantiasis
Trachoma
River blindness
Still other infectious diseases remain essentially uncontrolled or currently lack any
effective vaccines or therapies, among them:
Ebola
Marburg
HIV
Dengue fever and dengue hemorrhagic fever
West Nile virus
Hantavirus
SARS viruses
Leishmaniasis (sandfly fever)
Creuztfelt-Jakob Disease and variant Creutzfeldt-Jakob Disease
Food-borne toxigenic E. coli
Evolving highly antimicrobial-resistant strains of tuberculosis
Influenza type A
So far, successes in reducing the burden of disease in the developed world have
been remarkable. In the United States, the death rates for smallpox, diphtheria, and
polio have declined by 100% since vaccines were approved; for another nine
diseases, they have declined by 90% (McNeil 2007). To be sure, there have been
major setbacks (like the reemergence of tuberculosis, polio, yellow fever, even
plague), but in general progress towards the full control of infectious disease is
astonishingat least where it is fully implemented, as in the wealthy parts of the
Toward Control of Infectious Disease: Ethical Challenges for a Global Effort 201

world. In contemplating the possibility of eradication, elimination, or control of

the serious human infectious diseases, it might be said, we are halfway there, at
least in the developed world.

Human Health in Epidemiological Perspective

The already impressive successes of an emerging Comprehensive Global Effort, if

we can think of them as part of a long-term effort, are after all evident in the history
of demographic shifts in causes of human mortality. Up through the middle of
the 19th century, everywhere in the world, parasitic and infectious diseases were the
principal cause of human mortality (Olshansky and Ault 1987, 207217). With the
development of clean water, public sanitation, immunization, the germ theory
of disease, hand washing by physicians, antibiotics, and many other factors,
infectious disease (with the single exception of pneumonia) is not even on the
standard list of the top ten causes of death in the developed world. At the same time,
infectious diseases remain a major factor in the developing world, where death rates
particularly for children remain high. Just a century or two ago, infectious and
parasitic diseases were the way most people everywhere in the world died; in the
developed world, they are a much reduced threat, and where they do kill, kill
mainly the old. Infectious disease mortality in the United States has declined
remarkably in the past century, and now represents a small percentage (<5%) of
disability-adjusted life-years lost (Armstrong et al. 1999). The stark differences in
life expectancy around the world, ranging roughly from a high of between 75 and
86 years for both sexes in Japan, Australia, Iceland, Canada, the Netherlands, Cuba,
and the United Kingdom at the top end of the range, downward to 4060 years in
the poorer, developing nations, and in some countries, like Malawi, Mozambique,
Zimbabwe, Zambia, still lower, to Sierra Leone, with a low of 3740 years, is not
just a matter of disparate human development indices but differential death rates
from infectious disease (World Health Organization, data for 2005). A Comprehensive
Global Effort, it is painfully obvious, has already been very largely successful in
the developed worldthis may be part of what has allowed the developed world to
become developedbut has a long, long way to go in those countries left behind.

Is a Comprehensive Global Effort Realistic? On Eradication,

Elimination, and Control

It is crucial in understanding any Global Effort to recognize the differences

between eradication, elimination, and control. Complete eradication by eliminating
entirely the pathogen which causes disease is realistic in only a small proportion
of cases, those which involve human vectors only and no intermediate stages: e.g.,
smallpox, polio, measles, and tuberculosis. The eradication of all human infectious
202 M.P. Battin et al.

diseasethat is, completely ridding the world of all disease-causing pathogens in

the wildis not a realistic goal, since many human-affecting infectious diseases
also have nonhuman vectors or reservoirs. Tetanus, for example, lives in the soil; so
do the spores of coccidioidomycosis, a fungal infection responsible for valley fever
(McKinley 2008). Malaria involves a transmission stage in mosquitoes; so do
yellow fever, dengue fever, and many other arthropod-borne infectious diseases.
Other common infectionssuch as staphylococcal skin infections, or peritonitis
due to ruptured bowelare due to organisms that we normally carry on our skin or
in our gastrointestinal tracts, and attempts to eliminate one pathogen would be
foiled by the rapid appearance of other potential pathogens to refill the microbial
niche in the skin or gastrointestinal (GI) tract.
Furthermore, many pathogenic organisms do not require humans for their per-
petuation and are not acquired from other humans. Elimination of these organisms
in humans, for instance by means of universal immunization or effective treatment,
would still not eliminate these organisms, and the diseases they cause will remain
a continuing threat. Some human-affecting diseases also affect animals and are
carried by animalsRift Valley fever, for exampleand unless contact between
these animals and humans were completely interrupted, control of these diseases in
humans could not be complete without achieving control in the animal population
as well. Some pathogens affect both people and plants, like the bacterium
Burkholderia cepacia (people and onions), which can be lethal for people with
cystic fibrosis, or Serratia marcescens (people and squash plants), which reaches
immunocompromised hospital patients through floral arrangements, salads, and
intravenous tubes (Milius 2007, 251); it is hard to see how these pathogens could
be entirely eradicated. And some infectious diseases, such as influenza and HIV,
reappear in modified form and potentially require ongoing prevention or treatment
in generation after generation. At this point in the human history of infectious
disease, there is just one extant example of complete eradication: smallpox. But
there are many examples of elimination, that is, reduction to a very low level, like
leprosy, plague, and polio, the latter on the verge of eradication despite recent
outbreaks. And there are many examples of full or nearly full control, at least in the
developed world, where disease is preventable, treatable, or curable by means of
immunization, antimicrobials, sanitation measures (e.g., clean water), or other
effective prevention or treatment.
Of course, there is an immense gap between diseases which can be eliminated
and diseases which are in fact eliminated. Leprosy, for example, falls in this cate-
gory, as do many of the so-called neglected tropical diseases for which effective
treatment is known but not widely available: here the gulf between the developed
world and the developing world is at its greatest. It is already possible in principle,
despite enormous practical obstacles, to reduce dramatically much of the huge
burden of disease suffered by those in poorest parts of the globe, and as new diag-
nostic technologies, vaccines, and treatment modalities are developed, so does the
likelihood of elimination or full control for many additional diseases.
Obviously, even in the developed world control of infectious disease will never
be complete. There will always be newly emerging diseases: in recent years, some
Toward Control of Infectious Disease: Ethical Challenges for a Global Effort 203

39 new communicable diseases with the potential to become pandemic have

jumped species, including SARS, monkeypox, and bird flu (Rubin 2008). The
prospect of newly designed or already known pathogens used as bioweapons cannot
be ruled out (Selgelid 2007; Zilinskas 2007). Climate change, settlement of newly
cleared land, and warfare and its dislocations can also play a role in the emergence
or evolution of disease.
Some theorists might argue that certain serious diseases should not be elimi-
nated because they are useful in other respects, as when pneumonia serves as the
old mans friend, a bringer of death more easeful than that from other human
maladies. Others might point to research suggesting that exposure to infectious
disease has played a major role in mammalian evolution, resulting among other
things in the development of the amniotic sac and other adaptive advantages (Zuk
2007), and thus argue that continuing exposure should not be eliminated, lest
further evolutionary gains be lost. Still others claim that the overuse of antibacterial
soaps and other germ-proofing methods results in higher rates of asthma and
allergies. A Comprehensive Global Effort certainly would not seek to exterminate
all parasites, fungi, bacteria, viruses, and prions (the microorganisms that affect
human beings), since many are essential for human health, but only the pathogenic
ones that do not have beneficial functions and are responsible for extensive human
morbidity and mortality. It is this process of overcoming disease that we see as
already well under way in any long-term Comprehensive Global Effort.
We may ask, then, phrasing the question in three ways that correspond to seeing
a Comprehensive Global Effortas a thought experiment, as a report of current
activity, or as a planwhat would it be like if, what is happening that, or what do
we need to do to try to achieve the eradication, elimination, or full control of serious
human-affecting infectious disease, say within the decade 20202030, around the
globe? The question, in each of these forms, is not just about what practical projects
of research, policy development, or implementation would be most urgent, but also
about what ethical issues most urgently require attention as a Global Effort
proceeds.
We suggest five tracks along which to consider these questions.

Track 1: National and International Organizations

and the Development of Collective Will

If a Comprehensive Global Effort is to succeed fully, it would be important to foster

the cooperation of institutions and players of all sorts, public and private. Many are
already committedbut not all. Thus a first part is to consider what sorts of insti-
tutions are critical to infectious disease control, which are helpful, which are prob-
lematicand how the support of such institutions could be enlisted and maintained,
or modified where it has been counterproductive. This is to seek to establish and
maintain the collective, global will to try to reduce the global burden of infectious
disease as low a level as possible. The practical challenge is to develop the global
204 M.P. Battin et al.

political will to try to work together to bring infectious disease under control in the
first place, and it is a substantial challenge. If the many sorts of institutions are all
to cooperate, it would require laying aside infighting, reducing political competi-
tion, avoiding distraction by shifting from one to another short-term numerical
target (Farmer and Garrett 2007), avoiding turf wars, and other things that could
derail progress (Cohen 2006, 162167). Could all these institutions contribute
cooperatively in their myriad ways to a common project, even for just a decade?
How such matters should be addressed is a crucial issue for reflection in the devel-
opment of this track of a Global Effort to Close the Book on Infectious Disease.
After all, the Effort cannot succeed, or succeed quickly, if some institutions under-
cut the efforts of the whole.

Track 2: Epidemiologic and Health Care Infrastructure

Track 2, epidemiologic and health care infrastructure, is widely recognized as

indispensable in the control of infectious disease. The absence of adequate health
care infrastructure, including the absence of adequate diagnostic and surveillance
measures as well as adequate immunization and treatment measures, can contribute
dramatically to the unchecked spread of infectious disease. An outbreak unnoticed
(or ignored) can have an immense amplification effect down the road; the stitch in
time approach to infectious disease is key to prevention, in that it is almost always
easier to stop one case now than ten cases down the roador a hundred, or a hun-
dred thousand. Poverty and war have crucial amplifying effects: diseases that might
be mild or resisted altogether by individuals who are healthy and well nourished
may spread rapidly in disrupted conditions where people endure malnourishment,
parasites, and chronic illness. Natural disasters can also produce similar effects, if
populations are cut off from care, and if the conditions of the disasterstanding
water after a flood, for instancecreate risks of disease. Economic practices can
also affect disease transmission: for example, the practice common in many devel-
oping countries that physicians see private patients rather than poor, charity ones,
exacerbates disease transmission, since it is poor, charity patients who are most
likely to be afflicted because of their crowded living conditions and lack of access
to clean water and adequate sanitation.
Poverty, war, and natural disaster are also typically associated with inadequate
infrastructure: for those who do become ill, health care is hardly available; clinics,
if there are any, are overcrowded; personnel are inadequately trained and hopelessly
stressed; medications are outmoded or unavailable. Poverty and war are often
closely intertwined: northeast Kenya, for example, has a million refugees from
Somalia, people for whom the risks of infectious disease are compounded over the
already difficult lives they had previously led. Another 300,000 have been inter-
nally displaced following the postelection violence in early 2008, and the chief
among the many health risks they face is cholera (Harvard World Health News
2008). Life in refugee camps or urban slums, often without adequate sanitation
Toward Control of Infectious Disease: Ethical Challenges for a Global Effort 205

facilities, is, as our PVV view might describe it, life most fully enmeshed in the
web of disease, life in which people are most obviously way-station selves as
microorganisms travel unchecked among them. Thus, in seeking greater control of
infectious disease, attention to social and sanitary infrastructure issues is crucial:
Clean water
Sanitation
Waste disposal
Control of insect and animal vectors (mosquitoes, fleas, rats, etc.)
Control of environmental toxins
Health-related transportation, including roads or airlifts and other ways of bring
health care to people in remote or disrupted communities
Enhancement of health care delivery systems, especially vaccine delivery
systems, treatment facilities, and easy-access clinics
Encouragement of use of low-tech, low-cost modalities for infectious-disease
prevention: bed nets (Bradley 2007), water filters, drinking straws, and pond
attendants, etc.
Development of novel health care delivery modalities, e.g., accompagnateurs
(Farmer and Garrett 2007) as Partners in Health has utilized in HIV/TB treat-
ment in Haiti
Attention to the causes of poverty associated with infectious disease, particularly
those associated with the neglected tropical diseases and with disease outbreaks
among dislocated populations like refugees
Attention to the causes of war, civil conflict, guerilla actions, and related hostili-
ties that exacerbate the risks of infectious disease
Rapid response to natural disasters, with particular attention to special charac-
teristics of a disaster that might encourage the spread of disease
Ethical questions associated with this enormous variety of concerns might range
from consideration of who should receive how many bed nets and what they may
or may not do with them, to requiring contributions or labor for the installation of
sanitary systems, to the very substantial privacy and confidentiality issues that arise
with local and global surveillance systems. Modeling methods used in planning,
whether for endemic disease in poverty and war or for outbreaks associated with
pandemics of newly emerging diseases or in natural disasters, are of particular ethi-
cal significance under the PVV view, since they often incorporate assumptions
about what levels of disease can be tolerated; the PVV view warns against cavalier
acceptance of leaving a significant proportionindeed, any proportionof a popu-
lation still subject to preventable or treatable disease, since that is to ignore the fact
that those who suffer disease are indeed victims.
Particularly important under the PVV view is attention to how large-scale pro-
grams are formulated. Classic epidemiology tracks disease movement through
populations. Research agendas focus on issues of particular salience in specific pop-
ulations but leave aside others. Treatment programs often target just those
populations or population subgroups at highest risk of contracting and transmitting
disease. There are obvious advantages of design and efficiency here, but at some
206 M.P. Battin et al.

moral cost. Our PVV view insists that those left outside these categoriespeople
not in high-risk groups who nevertheless contract disease, people whose groups are
not the focus of research efforts, and sufferers from orphan diseasesbe recog-
nized too, both in their own roles as vectors but especially as victims.

Track 3: Scientific Development

Effective control of human infectious disease cannot be possible without continu-

ing scientific development. Examples of scientific effortsmany already well
under waythat would be essential to achieving any measure of success involve
better diagnosis, better treatment, better mechanisms for prevention, and better
background science in the understanding microbial pathogenesis, defense mecha-
nisms in humans, and evolutionary, genetic and other factors relevant to human
vulnerability to infectious disease. The Gates Foundations handsomely funded
Grand Challenges in Global Health program already includes some 14 research
incentives which serve seven long-term goals in global health: improving childhood
vaccines, creating new vaccines, controlling insects that transmit agents of disease,
improving nutrition to promote health, improving drug treatment of infectious dis-
eases, curing latent and chronic infection, and measuring health status accurately
and economically in developing countries (Singer et al. 2007). These are immense
important goals; many others are in progress or remain to be developed. A group of
comparatively realistic research goals would include:
Improvement or development of rapid, reliable tests for all infectious diseases,
based on PCR, proteomic, or nanotechnology methods:
Goal: 100% specificity, 100% sensitivity: 0 false positives, 0 false negatives,
including field-usable tests available at point-of-care
Goal: rapid speed of identification, in minutes or seconds
Goal: low cost, easy use
Improvement of genetic identification methods for pathogens and other means
for transmission tracking
In humans
In animal vectors
Development of improved methods of rapid identification of emerging diseases
Pathogen identification and disease diagnosis are crucial in prevention, and central
to a Global Effort already under way. Particularly challenging scientific goals
include treatment as well, especially since treatment possibilities change with the
rapid replication rate of many infectious organisms, with the development of drug
resistance, and other factors. A drug that may have worked in one context, like
chloroquine for malaria, for example, may not work in other contexts or with the
same disease in other regions (Bradley 2007); developing effective prevention
Toward Control of Infectious Disease: Ethical Challenges for a Global Effort 207

and treatment is an ongoing challenge. Other obviously crucial scientific goals

include:
Development of improved vaccines and vaccine administration and storage
methods
Development of improved antimicrobials and other treatment methods
Development of safer insecticides and vector controls
The PVV view also urges that governments and entities recognize the hypothetical
as well as actual reasons for support of scientific research and cooperation in a
Comprehensive Global Effort: although epidemics may at the current historical
moment seem particularly likely to afflict some countries or continents rather than
others, when it comes to globally transmissible disease, it could be otherwise. After
all, dengue may be spreading to areas that, it is claimed, are warming with global
climate change, but influenza flourishes in colder weather, and we may be quite
unable to predict the ranges of future, not-as-yet emerging diseases.

Track 4: Religious, Social, and Cultural Considerations

Track 1s concern with developing cooperation among the various major institu-
tions of the worldgovernmental, corporate, private, intergovernmental, and so
onalso included religious institutions. Inasmuch as religious traditions and their
institutions influence much of what people in every part of the globe think about
disease and also govern their disease-transmission behavior, from hand washing
before meals to sexual contact, the participation of religious institutions is crucial
to the success of a Global Effort. However, some religious traditions preserve scrip-
tural or traditional characterizations of infectious disease as scourge, as punish-
ment that is divinely ordained, or as the product of wrong behavior in this or
previous lives. Addressing these often archaic characterizations of infectious dis-
ease is of consummate importance in securing the cooperation of people and their
religious institutions, often enormously powerful, around the globe.
Consider the various portrayals of leprosy or plague or other infectious diseases in
the scriptures of religious traditions. In the Hebrew/Christian Bible, for example, God
allows Satan to test the loyal Job with any hardship that is short of fatal, and Satan
begins with infectious disease (perhaps leprosy or a staph infection?): Satan smote
Job with running sores from head to foot, so that he took a piece of broken pot to
scratch himself as he sat among the ashes (Job 2:79, New English Bible transla-
tion). In the Muslim Hadith, plague is described as a means of torture which Allah
used to send upon whomsoever He wished, but He made it a source of mercy for the
believers, for anyone who is residing in a town in which this disease is present, and
remains there and does not leave that town, but has patience and hopes for Allahs
reward, and knows that nothing will befall him except what Allah has written for him,
then he will get such reward as that of a martyrin other words, plague is a punish-
ment, though it can also become a blessing for those who believe (al-Bukhari 1959).
208 M.P. Battin et al.

In many religious traditions, the implication is that people or groups afflicted by

disease deserve it in one way or another, and that such illnesses are a product of divine
wrath visited upon them or perhaps an opportunity for spiritual growth.
Attitudes about HIV/AIDS or other STDs expressed in some contemporary reli-
gious groups sometimes construe contracting the disease as punishment for homo-
sexuality, infidelity, promiscuity, or other sinful behavior, either of individuals or of
groups. Fatalism may also be associated with religious views, as when it is held that
the visitation of infectious disease is Gods will and hence that nothing can be done
about it. Both religious and cultural attitudes may be involved in ancient practices
like belling lepers or shunning victims with pocks, boils, open sores, or other
visible evidence of disease. In some traditions, such attitudes may include views
that the afflicted not only deserve it but are not our problem, that justice is being
done and others have either no obligation to intervene, or no intervention is appro-
priate. Some religious groups appear to fear that attempts to reduce infectious
disease transmission, especially of sexually transmitted diseases like HIV, might
interfere with teachings prohibiting homosexuality or encouraging chastity. And
some religious traditions value the contingency of human life per se, appearing to
hold that efforts to forestall illness or delay death are contrary to divine plan.
Religious beliefs and attitudes can of course play a strongly positive role in
encouraging cooperation with a societal project to protect the life and health of
human beings. Religious commandments like do not kill and respect life speak
in favor of bringing potential lethal infectious disease under control. Traditions
which stress compassion and the relief of suffering would presumably also support
the underlying concern of a Global Effort, to extricate humankind from the web of
disease within which it is enmeshed. Some religious traditions stress the unity of
human beings in divine creation; some stress stewardship of the environment and
with it, concern for human health; some emphasize attitudes of caring, concern, and
compassion for those who are ill. And many stress the value of sacrifice and dedi-
cated work for the good of the community, a commitment believed to be viewed
favorably by the divine or rewarded well in the next life. These are all attitudes that
suggest that religious institutions might play a powerful role in engendering cooper-
ation with a Global Effort by the worlds faithful who subscribe to these views.
But not all religious views concerning infectious disease favor constructive
cooperation. To challenge entrenched social or religious beliefs is never easy, and
rarely fully successful. This is the issue our PVV view expects us to put on the
table: that entrenched beliefs and practices may fail to regard people, both as indi-
viduals and in groups or populations, as both victim and vector at one and the same
time, in ways that work to the detriment of all.

Track 5: Legal and Social Protections for Individuals and Groups

Our PVV view here also recognizes that a Global Effort for the control of infec-
tious disease cannot satisfy the conditions of this view unless it attends to legal
and social protections for individuals and groups, to ensure that neither
Toward Control of Infectious Disease: Ethical Challenges for a Global Effort 209

individuals nor groups are victimized by institutional measures, scientific research

programs, infrastructure changes, or other matters that are part of the Global
Effort. This is to recognize that, under our PVV view, victimhood can have a
dual sense: a person or group, or entire population, may be the victim of a dis-
easethis is the primary sense of victim in the PVV viewbut may also be the
victim, so to speak, of policies, programs, prejudices, and other matters associated
with disease, or both.
Legal and social protections for individuals, groups, and populations, under our
PVV view, should include at least:
Development of rigorous local, national, and international protections for
privacy and confidentiality of individual information in surveillance systems
In reporting of data
In contact tracing and transmission tracking
In follow-up for health care
Development of policies concerning rights to privacy and/or confidentiality
for information that poses a risk to other people, or a right to privacy in a
public place
Development of protections and systems for maximum communication among
families and social groups during isolation, quarantine, home quarantine, or
other restrictions in epidemics
Development of protections for things that matter to people, e.g., pets and
property
Attention to animal rights and animal-welfare issues
Erection of special protections for the least well-off (and most likely to be
affected by infectious disease):
Refugees
Prisoners
The institutionalized, including those in mental institutions
The homeless
The elderly
Infants and children
People with disabilities, poor health, or compromised immune systems
As Michael Parker puts it, echoing the British pandemic plan, Everyone matters
(Parker 2007). This notion is essential to our PVV view: while it recognizes that
trade-offs between concerns like privacy and surveillance or confidentiality and
interruption of transmission must sometimes be made, it still insists that policies
not victimize or exempt those whom they affect.
A further area of concern about legal and social protections for individuals and
groups involves attention to micro- and macroeconomic issues. What will be the
impact of a Global Effort on all parties? Some concerns might involve those whose
current income depends on treatment of infectious disease. After all, if a Global
Effort were to succeed and the global burden of infectious disease dramatically
reduced, this income would be eliminated. Who will be out of a job? Larger economic
210 M.P. Battin et al.

concerns might focus for instance on the impact of higher rates of infant and child
survival on domestic and social situations where poverty is severe, or on changed
patterns of survivalreflecting the success of a Global Effort in reducing death
rateson economies around the world. There would presumably be relatively little
effect on economies in the advanced industrial nations where infectious disease is
already largely under control, but there could be dramatic effect in the worst-off
nations of the world. Like everything else associated with it, a Comprehensive
Global Effort should be subjected to adequate scrutiny in the decades prior to and
during the culminating phase itself, with of course an eye to mitigating economic
damage where it threatens to occur and but reaping the economic benefits of effec-
tive disease control as well.

A Comprehensive Global Effort: From Thought

Experiment to Plan

Attempts to control infectious disease are already going on in many areasindeed,

in all five practical and policy tracks considered aboveand they all raise impor-
tant ethical issues. A Comprehensive Global Effort for the Control of Infectious
Disease, incompletely developed as it is, is already well under way, whether we see
it as a thought experiment, a description of current events, or a plan. Whichever
way we interpret it, it requires us to consider the importance of not only global
coordination and cooperation, but also the importance of coordinated, across-the-
board ethical reflection. This ranges from reflection on comparatively focused
issues like how to balance considerations of confidentiality versus public interest,
how to weigh the impact of mandated treatment, or how to prioritize access to pre-
vention and care in epidemics, to the deeper but at the moment more diffuse sorts
of philosophical issues, such as whether attempts to control infectious disease
should be given priority over attempts to control cancer or whether bioweaponry is
intrinsically worse than conventional arms. In part because attention to the full
control of infectious disease on a global scale has not so far been unified, the ethical
issues each distinct effort raises have not been unified either, and have to a consid-
erable extent been treated in comparatively isolated, discrete, siloed ways, even
now that they are finally coming to be discussed at all in bioethics and other fields.
This is not to say that ethical issues are to be viewed in a monolithic way, but rather
that reflection on them must include understanding them in the larger context of a
world in which we are all in this together, all potentially victims and vectors of
transmissible infectious disease.
No writer, as far as we are aware, is currently advocating the kind of universal
surveillance or mandated treatment imagined in our airport thought-experiment,
and no writer is advocating a decade of intense dedication to infectious disease
control. But part of the point of a thought experiment like that is to test the ethical
challenges to be faced in the real world, not just in a fictional one, and hence
the challenges that would and do arise in what we see as an already-emerging
Toward Control of Infectious Disease: Ethical Challenges for a Global Effort 211

Comprehensive Global Effort. Ethical reflection in the context of infectious disease,

we have been arguing all along, must be far broader than it has been, even during
the efflorescence of the last seven or eight yearsthat is why we appeal not only
to a limited thought-experiment about airport surveillance but to the much broader
constellation of developments we have called an emerging Comprehensive Global
Effort for the Control of Infectious Disease.
If a Global Effort as imagined here seems too grandan overly far-fetched
thought experiment, a misdescription of current reality, or an unworkable concrete
planimagine what is involved in trying to extricate the globe from any one of the
particularly serious diseases that are currently widespreadsay, HIV/AIDS, or
tuberculosis, or malaria. These are all recognized as devastating. AIDS has already
killed 19 million people and, as of 2007, another 33.2 million are infected with the
HIV virus. Tuberculosis infects or has infected an estimated 30% of the global
population and kills about 2 million people a year. Worldwide, malaria infects
between 350 and 500 million people every year, and between 2 to 3 million die
from it90% in Africa, where it is estimated that one child dies from malaria every
30 seconds (Packard 2007, xvi). The new movement for global health, building on
the steady work of the WHO and others over many years and galvanized less than
a decade ago by the remarkable private contribution of the Gates Foundation, is
already committed to the elimination of these diseases; it has become a top global
priority. Yethere is the key to our project in this think big essayeliminating
any one of these diseases will raise virtually all the issues we have posed in the five
tracks outlined above. So would eliminating all three. Indeed, for any disease or
group of diseases for which we might consider trying to achieve global or even
local eradication, elimination, or control, issues about institutional cooperation,
infrastructure improvement, scientific development, religious and cultural attitudes,
and social and legal protections are all relevant. Comprehensive ethical reflection
is crucial in such an enterprise as well: while it is important to be sensitive to the
specific, factual features of any given case, we cannot do ethics piecemeal, as an
iterated effort one disease after another for the indefinite future, or in response to
one new technology, or one political challenge, or one scientific development at a
time, without a larger picture of human embeddedness in webs of mutual disease
transmission, within which they occur.
Think Big thought experiments are unlimited in scope, in this case fueled by
an elective optimism and bounded only by the limits of plausibility in assembling
the resources of the world to confront one of its most pervasive problems. We can
imagine, as we have said, other Global Efforts directed towards other global
problemsclimate change and global warming, endangered species rescue,
water justice, immigration management, global drug control, and so on. But the
vision of a Comprehensive Global Effort for the Years 20202030 for the
Eradication, Elimination, or Control of Infectious Disease may be, in contrast,
simpler: its overall purpose of reducing the burden of infectious disease may be
less controversial; its methods are not technically impossible; its science is
reasonably well understood; and it does not require the change of institutions,
only coordination and cooperation. Imagining such a project is of course to think
212 M.P. Battin et al.

big, but we can certainly imagine what this project would take, as the culmina-
tion of the efforts of several centuries, to achieve within a single decade a goal
with which the fate of humankind might be dramatically improved. There is no
way to guarantee that it would succeed. But it is a project already well under way,
since the time of Jenner and with the best efforts of dedicated researchers, clini-
cians, and workers in public health. There is no practical or moral reason not to
undertake this project, though plenty of reason to be cautious about how to do
sothat is what we have tried to explore.
There is another, darker reason for exploring the practical and ethical issues in the
Global Effort in this comprehensive way. A Global Effort, or even just continuing
ordinary efforts to control infectious disease, might contain repressive, biased, insensi-
tive, or otherwise morally indefensible elements, particularly if it were pursued under
a tight time schedule by zealous institutions or highly competitive players. That there
is a current efflorescence of ethical reflection does not entail that the various compo-
nents of the overall global effort will go ethically well, and ethical reflection by itself
will not prevent abuse. It is important to understand how even an admirable project
with a highly desirable goalextricating humankind from the web of infectious
diseasecould go wrong, that is, how it could be done, but not done well. It remains
to look at a variety of policies of the sort that might be involved in a Global Effort to
see what can go wrong with them as well as right, using our PVV view as a tool for
examining actual, real-world policies as a way of thinking about larger aims.

Acknowledgments We would like to thank a number of people who helped us think big at a
conference in July 2007 at the Uehiro Center for Ethics, Oxford University: David Bradley, Nim
Pathy, Angela McLean, Helen Fletcher, Paul Kelly, Anders Sandberg, Carl H. Coleman, Michael
Parker, Harold Jaffe, Angus Dawson, Michael J. Selgelid, Marcel Verweij, Dan Brock, Sren
Holm, Ray Zilinskas, and Matthew Liao. This chapter is an earlier, abridged and differently titled
version of chapter 20 from: Margaret P. Battin, Leslie P. Francis, Jay A. Jacobson, and Charles B.
Smith, The Patient as Victim and Vector: Ethics and Infectious Disease (New York: Oxford
University Press, forthcoming 2009).

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Shaping Ethical Guidelines for an Influenza
Pandemic

Rosemarie Tong

Abstract This chapter describes the process of shaping ethical guidelines for an
influenza pandemic by the North Carolina Institute of Medicine (NC IOM)/North
Carolina Department of Public Health (NCDPH) Task Force. The author discusses
the threat of a pandemic in the twenty-first century, comparing a potential pandemic
with past flu pandemics as well as the Severe Acute Respiratory Syndrome (SARS)
outbreak in Canada and parts of Asia. Also discussed are the ways in which influ-
enza would spread, be treated, and hopefully contained. Addressed are the ways in
which one becomes ethically prepared for an influenza pandemic, as well as the
challenges to incorporating ethical guidelines in preparations. Tong also addresses
the role of a duty/obligation/responsibility to work by health care personnel, the
role of volunteers, and when health care personnel may refuse to treat someone.
Also taken into consideration are such issues as the distribution of food and vac-
cines, quarantines, work stoppage, both physical and social infrastructure, the role
of military and police forces, and the effect of a pandemic, isolation, and quarantine
on various industries. Tong shows the complicated nature of working on a task
force and the complexity of incorporating ethics into logistical planning.

Keywords Influenza pandemic, Avian flu, flu vaccine, health care personnel,
bioethics, obligation, responsibility, ethics of care, quarantine, North Carolina
Public Health, international public health

Introduction

When the North Carolina Institute of Medicine (NC IOM) and the North Carolina
Department of Public Health (NCDPH) asked me to join a 37-member statewide
North Carolina Institute of Medicine/Department of Public Health Task Force to
develop ethical guidelines for an influenza pandemic, I thought they had dialed the
wrong number mistakenly. I told the NC IOM administrator who contacted me I
knew next to nothing about influenza pandemics, including the Avian Flu. She said
that my infectious-disease ignorance was of little concern to her; the NC IOM/DPH

M. Boylan (ed.) International Public Health Policy and Ethics, 215

Springer Science + Business Media B.V. 2008
216 R. Tong

Task Force would have among its members many public health and safety experts.
In addition, there would be representatives from government agencies, health care
organizations, businesses, industries, faith communities, and advocacy groups.
What the Task Force lacked were ethicists. Specifically, it needed an ethicist to
serve as co-Chair together with the Director of the North Carolina Department of
Public Health, and I had been identified as a likely candidate for this role.
Intrigued by the NC IOM administrators request, I asked her to be honest.
Would the NC IOM/DPH Task Force really be serious about ethics? Or would it
simply want to use ethics as a sweet frosting to lather over a cake of political deals
made between special-interests lobbies? She responded: Come to the first meet-
ing. If you do not like the way it goes, you never have to come to another meeting.
I went to the first meeting of the Task Force; I was very impressed by the sincerity
and genuine ethical concern of its members. After that meeting, I agreed to co-
Chair the Task Force. During the months that followed, I learned how alternately
heartening and disheartening the process of producing a set of guidelines that merit
the descriptor ethical can be. It is not easy to get 37 diverse people to develop and
endorse a set of ethical guidelines. On the contrary, it is very hard work!

The Threat of an Influenza Pandemic

in the Twenty-First Century

Influenza pandemics constitute a public health threat of global proportions. Although

people in the United States may think that such disease outbreaks are confined
mainly to their television screens and disaster films, history teaches that influenza
pandemics typically occur three times in a century. In the twentieth century, the three
influenza pandemics were the 1918 Spanish Flu, the 1957 Asian Flu, and the 1968
Hong Kong Flu (NC IOM/DPH Task Force 2007, 21). All were of avian (bird)
origin, and the worst of them was the Spanish Flu; worldwide, 50 million people
died. In the United States the death toll was 675,000 (Berlinger 2006). A particularly
vexing feature of the Spanish Flu was that it did not strike the populations that
annual flus generally hit hardest: the very young and the very old. Instead it targeted
people in their twenties and thirties (Engel 2007, 32). The other two twentieth-
century influenza pandemics (the Asian Flu and the Hong Kong Flu), though not as
devastating, were no small matter. The Asian Flu killed 2 million people worldwide,
70,000 of them in the United States; and the Hong Kong Flu killed 700,000 people
worldwide, 34,000 of them in the United States (Garloch 2006, A1).
Because the Avian Flu has yet to reach US shores, the US population has moved
on to worrying about other problems, the war in Iraq and the economy to name two.
But just because the Avian Flu has not visited the United States during the first
eight years of the twenty-first century, does not mean it will not. The first human
cases were reported in China and Vietnam in 2003. They were four in number, and
all were fatal. In 2004, 46 cases were reported in Vietnam and Thailand; of these,
32 were fatal. In 2005, 97 cases were reported in Vietnam, Thailand, China,
Shaping Ethical Guidelines for an Influenza Pandemic 217

Cambodia, and Indonesia; 42 were fatal. In 2006, 116 cases were reported in a large
range of countries: Azerbaijan, Cambodia, China, Djibouti, Egypt, Indonesia, Iraq,
Thailand, and Turkey. Of these, 80 were fatal (Engel 2007, 34). To be sure, the
Avian Flu has not killed many people to date, and no US citizen has succumbed to
its horrors. Yet, according to public health authorities, we are closer now to an
influenza pandemic than at anytime since the Asian Flu outbreak in 19681969
(World Health Organization 2007). When the first influenza pandemic of the 2000s
hits it will kill somewhere between 209,000 to 1,903,000 members of the US popu-
lation (Department of Health and Human Services 2006).
Although both pandemic flu and regular seasonal flu are similar in that they
spread easily between people by coughs and sneezes, they are quite different in
several other ways. With respect to regular seasonal flu, outbreaks typically occur
in the wintertime; the same type of flu virus occurs each year; and vaccine is gener-
ally available, with shortages being the exception rather than the rule. The situation
is quite different with respect to an influenza pandemic, however. Outbreaks can
occur any time; the type of flu virus is novel; and an effective vaccine takes months
to identify, develop, and get to market in large enough supplies to meet the demand
(Adler 2005, 44).
More than likely, an influenza pandemic will begin in a developing nation where
animal-to-human contact is close and public health systems are either nonexistent or
very fragile. An international traveler probably will bring the disease to US shores,
having exposed at least some of his or her traveling companions to the virus. Infected
patients will start trickling in to primary care offices, urgent care clinics, and hospital
emergency rooms. Regrettably, health care personnel may not have much in their
medical arsenal, over and beyond the antiviral Tamiflu, to treat the initial wave of
infected patients. Worse, before too long, health care personnel may find themselves
drowning in a sea of infected patients, unable to assist but a small fraction of them.
In North Carolina, public health officials know there is no way to be totally
prepared for a severe influenza pandemic. As they see it, even a mild or moderate
influenza pandemic would probably last eight weeks and result in 1.6 million physician
visits, 35,000 hospital admissions, and 7,900 deaths statewide (McGorty et al.
2007, 39). Nonetheless, despite their realization that their best preparedness efforts
may not be enough to meet North Carolinians needs during an influenza pandemic,
NC public health officials are determined to prepare as much as they can.

Laying the Foundation for an Ethical Preparedness

Plan for an Influenza Pandemic

To their credit, NC public health officials think North Carolinians need to be ethically
as well as medically prepared for an Avian Flu attack. As difficult as it is to get
medical systems of command and control, surveillance, vaccine and antiviral pro-
duction, and health care delivery prepared for a deadly pandemic, it is even more
difficult to get ethical codes and guidelines prepared for it. Experience teaches that
218 R. Tong

once an influenza pandemic hits full force, it is too late to formulate ethical codes
and guidelines to help citizens meet its distinctive ethical challenges. Accustomed
to using ethical guidelines that work well enough in the clinical context, people
may discover that the principles of autonomy, beneficence, nonmaleficence, and
justice need to be interpreted and/or prioritized differently in the public health con-
text. In addition, they may discover that these principles need to be supplemented
by ethical principles they rarely, if ever, invoke in the clinical context. For example,
individual freedom may have to give way to the public good.
Interestingly, the prime movers behind the NC IOM/DPH Task Force on which
I served were very much influenced by the work of the University of Toronto Joint
Center for Bioethics. In the aftermath of the 2003 Severe Acute Respiratory
Syndrome (SARS) outbreak in Canada and several Asian nations, members of
Torontos Joint Center for Bioethics drafted a document entitled Stand on Guard
for Thee: Ethical Considerations for Pandemic Preparedness Planning (University
of Toronto Joint Centre for Bioethics Pandemic Influenza Working Group 2005).
The phrase stand on guard for thee occurs in the Canadian national anthem.
It signals to Canadians their obligation to be on the lookout for each others best
interests. Whatever befalls one Canadian potentially affects all Canadians. Although
Canadians behaved well enough during the SARS crisis, manifesting their tradi-
tional communitarian spirit, the drafters of the Stand-on-Guard-for-Thee document
felt Canadians would have acted even better had they been ethically as well as
medically prepared for SARS. Among the things that went wrong ethically during
Canadas SARS experience were: (1) some health care personnel refused to care for
people infected with SARS and were subsequently dismissed for failing to report
for duty; (2) other health care personnel were socially ostracized or stigmatized
because they willingly cared for infected patients (Rhyne 2007, 51); (3) some phy-
sicians and nurses left their respective professions voluntarily because they did not
want to continue in what they had come to regard as a truly life-threatening job
(Rhyne 2007, 51); (4) some Canadians infected by or exposed to SARS did not
comply or fully comply with quarantine restrictions (University of Toronto Joint
Centre for Bioethics 2005, 1213); and (5) some Canadians boycotted all Chinese
businesses everywhere in Toronto just because the initial case of SARS was linked
to an international traveler from China (Yount 2005, 21).
Wanting to avoid SARS-like mistakes in the event that an influenza pandemic hit
the United States, the leaders of the NC IOM/DPH Task Force invited Alison
Thompson, PhD, to discuss the reasoning process behind Torontos Joint Center for
Bioethics document. The Task Force wanted to explore with her whether the ethical
values guiding the Canadian document were exportable to the United States.
Dr. Thompson stressed that two interrelated but nonetheless distinct sets of values, one
procedural and the other substantive, were embedded in the Stand-on-Guard-for-Thee
document. She then identified the procedural values as: (1) reasonability, (2) openness,
(3) inclusiveness, (4) responsiveness, and (5) accountability; and the substantive values
as: (1) individual liberty, (2) protection of the public from harm, (3) proportionality,
(4) privacy, (5) equity, (6) duty to provide care, (7) reciprocity, (8) trust, (9) solidarity,
and (10) stewardship (University of Toronto Joint Centre for Bioethics 2005, 67).
Shaping Ethical Guidelines for an Influenza Pandemic 219

No one on the NC IOM/DPH Task Force had a problem with the Toronto teams
procedural values, but several members of the Task Force questioned Dr. Thompson
about the Toronto teams definitions for the substantive values of solidarity, stew-
ardship, and reciprocity, respectively. In addition, they interrogated her about the
Toronto teams views on the duty to care as it applied to licensed health care profes-
sionals in particular, but to others as well. Did licensed health care professionals
really have a duty to risk their own lives in order to serve infected patients? Was
this duty professional, contractual, legal, or moral? Did nonlicensed health care
professionals have the same or different duties as licensed health care profession-
als? Did other professionals have the same or different duties as health care profes-
sionals? Did families have either a legal or a moral duty to take care of their
infected relatives? Was a duty the same as an obligation? A responsibility? Was
there a difference between a moral duty/obligation/responsibility and an ethical
duty/obligation/responsibility?
After Dr. Thompsons visit and nearly two months of sometimes heated, but
always careful, discussions the NC IOM/DPH Task Force decided not to embrace
the substantive values of solidarity and stewardship. Because some Task Force
members associated the substantive value of solidarity with unions and/or
socialism/communism, the Task Force as a whole decided to forsake this value as
too politically charged. Solidarity does not play as well on North Carolina soil
as on Canadian ground. Americans are, on the average, more individualistic and less
communal than Canadians; and solidarity with fellow citizens is not as important to
Americans as being able to chart the course of their own individual destinies.
NC IOM/DPH Task Force members reasons for rejecting the substantive value
of stewardship ranged from very serious ones to fairly comical ones. One Task
Force member objected to the substantive value of stewardship because he feared it
connoted heavy fiduciary burdens. Another Task Force member stated the term
stewardship had too many religious connotations. Yet another Task Force mem-
ber could not disassociate the term stewardship from memories of the stewards
who had served him on a recent ocean cruise. Realizing that stewardship was a
substantive value without which the Task Force could still accomplish its mission,
I suggested that, on balance, it was one we need not embrace.
Thinking that the IOM/DPH Task Force also would dismiss the substantive value
of reciprocity as yet another unpalatable Canadian import, I was surprised when the
entire Task Force embraced the value of reciprocity as one of its premier substan-
tive values. Apparently, most Task Force members reasoned it was only fair that
those who performed their usual duties and/or accepted heavier/riskier new duties
during an influenza epidemic should be reciprocated in some way during and/or
after the outbreak. Although some Task Force members interpreted reciprocity in a
way that suggested they had not progressed beyond Stage Two (Ill scratch your
back, if you scratch mine) on Lawrence Kohlbergs well-known six-stage trajectory
for moral development (Kohlberg 1971, 164165), other Task Force members inter-
preted the substantive value of reciprocity in quite demanding ways, such as requiring
those who receive services in an influenza pandemic to feel duty-bound to give back
something of at least equal value to those who rendered the services to them.
220 R. Tong

Health Care Personnel and the Duty/Obligation/Responsibility

to Work During an Influenza Pandemic

As I indicated above, one of the most prolonged and uncomfortable NC IOM/DPH

Task Force meetings centered on health care personnels purported duty to care for
infected patients during an influenza pandemic. Several Task Force members
asserted the term duty was too strong. To them, the term implied that health care
personnel had an ethical duty to care for infected patients. I responded that, as I saw
it, at least licensed health care personnel (e.g., physicians and nurses) did indeed
have an ethical duty to care for infected patients for three reasons. First, licensed
health care professionals have a greater ability than any other segment of the public
to provide medical care, a fact that increases their obligation to provide it. Second,
licensed health care professionals have a contract with society, resulting from the
privilege of self-regulation and self-licensure, that calls on them to be available in
times of emergency. Third, licensed health care professionals, by freely choosing a
profession devoted to caring for the ill, prima facie accept an ethical obligation to
act in the best interests of the ill and to assume a proportional share of the risks to
which their profession exposes them (NC IOM/DPH Task Force 2007, 28).
Within nanoseconds of my response, several vociferous objections were made to
it. Some Task Force members claimed that individuals professional ethics were
separate from their personal ethics. As they saw it, a professional duty was less ethi-
cally binding than a personal duty. When I asked them why, they had no definite
answer. However, I did find plausible the suggestion that because professional duties
typically are less linked to ones central self-identity than to personal duties, they
may be less ethically binding. Yet even though this suggestion made sense to me, it
also made me want to run for cover. Suddenly, I realized the extent to which ethical
theory has failed to clearly specify whether professional duties are perfect or
imperfect in the Kantian sense of these terms. For Kant, a perfect duty is one
which admits of no exception in the interests of inclination (Kant 1964, 96).
In contrast, an imperfect duty is one that must be performed at least sometimes when
the opportunity arises. Did licensed health care professionals always have a duty to
treat infected patients during an influenza pandemic or could they, with clear con-
science, balance their duty to care for infected patients against their duty not to infect
others, including themselves under certain circumstances? In answer to my question,
one Task Force member noted that the American Medical Association (AMA)
Policy E-9.067 Physician Obligation in Disaster Preparedness and Response states:
The physician workforce is not an unlimited resource; therefore, when participating in
disaster responses, physicians should balance immediate benefits to individual patients
with ability to care for patients in the future. (Rhyne 2007, 52)

He then claimed that, at most, health care professionals had an imperfect duty to
care for infected patients. Other members of the Task Force disagreed. They wor-
ried that unless health care professionals were exhorted to think they have a perfect
duty to care for infected patients, they would always find a reason not to discharge
their imperfect duty to care for infected patients.
Shaping Ethical Guidelines for an Influenza Pandemic 221

The perfect/imperfect duty debate was never resolved. Rather it was shelved for
future consideration. But not every uncomfortable debate was shelved. Sometimes
the Task Force had the fortitude to resolve a moral disagreement relatively quickly.
For example, when two Task Force members referred to Ayn Rands The Virtue of
Selfishness (Rand 1964), claiming that the only moral duty individuals had was the
duty to maximize their own self-interest, they were immediately challenged by the
majority of Task Force members who claimed either that individuals had moral
duties to others or that it was in individuals self-interest to serve the interests of
others. Realizing there was major opposition on the Task Force to Ayn Rands
brand of ethical egoism, her two followers quickly decided it was probably in their
own self-interest to soft-pedal their point of view. However, one of them suggested
the Task Force reserve the term duty or obligation for (1) licensed health care
personnels professional obligation to care for infected patients; and (2) unlicensed
as well as licensed health care personnels contractual obligation to meet the terms
of their respective employment agreements. He further suggested that a weaker
term like responsibility be used to refer to everyone elses purported duty/obliga-
tion to assist each other in times of need. Although I was not certain I agreed with
these two suggestions, I ultimately voted with the rest of the Task Force to accept
them as verbal distinctions that probably would not make much of a substantive
difference in the Task Forces final report.
Relieved to have the duty/obligation/responsibility wordsmithing session
behind it, the NC IOM/DPH moved on to a matter more easy for it to understand
and discuss; namely, what society owed to health care personnel willing to put
their lives on the line for the sake of the common good. As it considered societys
debt to those who serve it in times of crisis, the NC IOM/DPH Task Force repeat-
edly invoked the value of reciprocity. To its credit, the Task Force was alert to the
fact that if health care personnel and other critical workers were asked to fulfill
their duties/obligations/responsibilities to society, it was only fair that society
express its gratitude to them. Thus, the Task Force insisted that frontline health
care personnel and others at increased risk of infection should have priority for pro-
tective equipment, antiviral medications, vaccinations, counseling services, and
adequate on-the-job training if necessary (NC IOM/DPH 2007, 2932). In addition,
most, if not all, of the Task Force members insisted that families of frontline
health care personnel be given priority for preventive measures and/or curative
treatments, so as to increase the likelihood of health care personnel reporting for
duty. Finally, the Task Force urged government authorities to take measures such
as the following three:
1. Establish liability immunity for good faith medical treatment and triage
judgments.
2. Suspend Health Insurance Portability and Accountability ACT (HIPAA) regula-
tions enforcement in cases of necessary and/or inadvertent violations in a crisis
situation.
3. Provide a compensatory program modeled on workmans compensation for
physicians who die or become disabled as a consequence of providing care in a
pandemic (Rhyne 2007, 52).
222 R. Tong

Interestingly, the NC IOM/DPH Task Force considered, but ultimately rejected, the
suggestion that health care personnel, nonlicensed as well as licensed, be paid extra
for working during an influenza pandemic. Several Task Force members feared that
extra pay might entice infected health care personnel to report for work. They had
in mind relatively low-paid health care personnel such as nurse aides.
As much as I wanted to believe that most health care personnel would continue to
work during an influenza pandemic, reciprocated or not, my inner skeptic chipped away
at my inner optimist. My unease increased when several Task Force members recom-
mended that we rely on volunteers during an influenza pandemic. The idea of relying
on volunteers is, in the Southeast region of the United States, still enormously popular.
The region is characterized by a particularly large number of charitable organizations,
many of them church based. A remarkably high number of physicians and other health
care personnel volunteer to work at free clinics, respond to medical crises whenever and
wherever they occur, and serve desperately ill people in developing nations. Yet, in time
of an influenza pandemic, there may be something wrong about relying on volunteers.
I asked the Task Force if risk of death should not be distributed equally among all health
care personnel, particularly the licensed ones. I noted that during the height of the HIV
AIDS crisis, when a sizeable number of physicians and nurses refused to treat infected
patients, Abigail Zuger, MD, argued that the American Medical Association (AMA)
code of 1847 had it right when it stated: When pestilence prevails, it is their duty to
face the danger and to continue their labors for the alleviation of suffering, even at the
jeopardy of their own lives (Zuger 1987). The 1847 code imposed on all licensed
health care professionals, and not merely the volunteers among them, the duty to care
for infected patients during an influenza pandemic.
To be sure, there are times when a health care professional justifiably may refuse
to treat an infected patient on the grounds that his or her attempt to do so would
most probably (or nearly certainly) result in more harm than good for the patient.
For example, the Task Force imagined the following scenario as one which might
constitute a justification for a licensed health care professional, in this case a
psychiatrist, not to treat an infected patient:
A psychiatrist has been called in to help hospital personnel cope with the stresses of the
influenza pandemic. Suddenly, while waiting to speak with emergency department physi-
cians, a patient on a gurney begins to turn blue and struggle to breathe. All of the other
physicians and healthcare personnel are busy with equally ill patients. The psychiatrist
knows that she must intubate the patient (e.g., insert a breathing tube into the patients air-
way) to help him breathe but has concerns because she has not intubated a patient since she
was an intern 10 years ago. Should she intubate the patient? Is the risk of him dying greater
than the risk of her injuring him while attempting to intubate him? What if something goes
wrong? (NC IOM/DPH 2007, 32)

Still, even in this scenario, from a patients point of view, he or she might reasonably
prefer the help of a psychiatrist with rusty intubation skills to no help at all. If not the
psychiatrist, then who? The health care ethicist on call? A food service employee?
Although the Task Force seemed particularly worried that not enough health
care personnel would be willing to risk their lives for infected patients, the health
care personnel on the Task Force all expressed the sentiment that if an influenza
pandemic did hit US shores, they intended to report for duty. They felt personally,
Shaping Ethical Guidelines for an Influenza Pandemic 223

as well as professionally and contractually, bound to do so. However, one physician

in this group, who described himself as a realist, said his and other health care per-
sonnels good intentions might weaken or even disappear if a sizeable number of
health care personnel died as a result of serving infected patients. He noted that
during the three-century long pandemic of bubonic plague in Europe, each new
outbreak provoked physicians to reconsider their duty to treat infected patients.
I added that during this plague many physicians ultimately followed the advice they
gave patients: namely leave fast, go far and return slowly (Jonsen 2000, 45).

Other Critical Workers and Duty/Obligation/Responsibility

to Work During an Influenza Pandemic

Although the NC IOM/DPH Task Force spent considerable time addressing the
concerns of health care personnel, throughout its deliberations it always was aware
that health care personnel were only one among many types of workers critical to
maintaining society during an influenza pandemic. Although there are significant
differences between a medical crisis like an influenza pandemic on the one hand
and a natural disaster like a hurricane, earthquake, or tsunami on the other, there are
certain similarities. When the situation gets direand people find themselves in a
survivor scenario, scrambling for water, food, shelter, and other necessities
moralitys grip on peoples minds and hearts is severely tested. To be sure, such
disastrous states of affair often bring out the best in people; but sometimes they also
bring out the worst. Therefore, the Task Force reasoned it would be incumbent upon
government officials to get not only health care personnel but also other socially
essential personnel to do their jobs.
In its deliberations about the degree to which workers in critical, nonhealth-
related industries would have duties, obligations, and/or responsibilities to work
during an influenza pandemic, the NC IOM/DPH Task Force struggled to draft a
complete list of industries critical for social functioning. It found some helpful
leads in the US Department of Homeland Securitys (DHS) list of 17 critical indus-
tries that comprise the national infrastructure and would require protection in the
event of a terrorist attack or other hazard: agriculture and food; energy; public
health and health care; banking and finance; drinking waters and water treatment
systems; information technology and telecommunications; postal and shipping;
transportation systems including mass transit, aviation, maritime, ground or surface,
and rail and pipelines systems; chemical; commercial facilities; government facili-
ties, emergency services; dams; nuclear reactors, materials and waste; the defense
industrial base; and national monuments and icons (NC IOM/DPH 2007, 35).
Absent from this list (and rightly so because it is a list of industries) were two sets
of critical workers whom the Task Force thought would be essential during an
influenza pandemic: the police and the military.
No doubt, it was largely the memory of the aftermath of Hurricane Katrina in New
Orleans that prompted the NC IOM/DPH Task Force to realize how much social
224 R. Tong

order depends on a disciplined, fair, and humane police force and military to stay the
course during times of civil unrest or even panic. In a Newsweek article written shortly
after Katrina hit New Orleans, the reporter noted that within the space of days, the
city was on the verge of anarchy and policemen [sic], many of whom had lost their
homes, were turning in their badges rather than face looters for another day
(Thomas 2005, 4748). The National Guard had to be called in. Eventually order was
restored, in large measure because so many people had left New Orleans voluntarily
or involuntarily. There were other places to gosafer places. But in a full-scale influ-
enza pandemic there will be no safe places to which to flee. The Task Force theorized
that although most workers in critical industries probably did not have the same
degree of duties/obligations/responsibilities to work as, for example, licensed health
care personnel had, the police and military probably did.
To the Task Forces relief, the police personnel Task Force members on it stated
they viewed themselves (as well as the military) as having a professional as well as
contractual duty/obligation/responsibility to do their job during an influenza pan-
demic. Police personnel had some concerns, however, about how to maintain order
at pressure points such as grocery stores and pharmacies. They also were worried
about the role they might be required to play in enforcing isolation, quarantine, and
social-distancing regulations. Significantly, none of the Task Force members were
official representatives of the military sector, a fact that concerned me. Given the
role the National Guard had played in trying to restore and keep order in the after-
math of Katrina, for example, I thought it would be important for the Task Force to
at least be informed about the NC National Guards influenza pandemic plans. Do
they exist? I felt we were largely avoiding discussions about a worse-case influenza
pandemic during which police personnel and military personnel might need to
resort to force (even deadly force) to maintain order.
Significantly, the police personnel on the NC IOM/DPH Task Force were not the
only group of nonhealth critical workers who voiced more than a contractual obli-
gation to work during times of crisis. The Task Force was most impressed by the
influenza pandemic preparedness plans of North Carolinas energy industry. One
representative of this industry spoke with particular eloquence about the ethos
behind his companys preparedness plan. He said, We know folks will need light
and heat and we are determined not to leave them in a lurch during a crisis situation
even if we take a major financial hit. The Task Force noted how sensitive the com-
pany in question was not only to its customers needs but also to its employees
needs (Kerin 2007, 6264). Indeed, the company put many health care institutions
preparedness plans to shame.
In contrast to the NC police force and the NC energy industry, the food industry
seemed to be significantly unprepared for an influenza pandemic. No one was quite
sure whether the food industry included only farms and groceries, or whether it also
included restaurants; and Task Force members from the food industry confessed
their companies had no explicit ethos about their duty/obligation/responsibility to
feed the public in time of crisis. Most people who work in the grocery stores at
which the public shops and the restaurants at which it eats are paid fairly minimal
wages. During an influenza pandemic, food-industry employees may respond in
Shaping Ethical Guidelines for an Influenza Pandemic 225

dramatically different ways to come-to-work summons. Some may refuse to

work for fear of being infected by customers or coworkers; others may insist on
working for fear of having no income or being fired.
The more the NC IOM/DPH Task Force focused on the food industry, the more
it realized that during an influenza pandemic, food might become a scarcer resource
than medical treatment. How would food be delivered to isolated, quarantined, or
socially distanced people? Who would deliver it? Who would pay for it? And so
forth. I thought to myself: Does any ethicist I know have good answers to such
everyday, but crucial, questions? What, if anything, do workers in the food industry
owe the public; and what, if anything, does the public owe them? I was relieved
when the Task Force decided to move on to another topic, largely because I realized
that as much as ethicists like to talk about applied ethics, they rarely address issues
such as whose obligation it is to feed the grumpy old man down the street who has
a hard time walking and communicating and who seems to have no visitors.

Social Distancing, Isolation, and Quarantine

Unfortunately, the next major topic of discussion also proved to be a difficult one
for the Task Force to address. During an influenza pandemic, some individuals
rights would need to be temporarily suspended to protect the public from harm. For
example, during a mild influenza pandemic (1 on a scale of 1 to 5), public health
officials may require isolation of actually infected persons at home or in a secure
environment. They may also require quarantine of individuals exposed to the virus,
once again in their own homes or in a secure environment. The rest of the public
could go about its usual business. In contrast, in a severe influenza pandemic (4 or 5
on the 15 scale), not only would isolation and quarantine measures be imple-
mented, so too would social-distancing measures be implemented. Schools and day
care centers might be asked or required to close (NC IOM/DPH Task Force 2007,
4142). Large social gatherings including church services as well as sports and
entertainment events might be discouraged or even prohibited. Moreover, in a
worst-case scenario all nonessential businesses might be asked or required to close
and/or all nonessential workers might be asked or required to stay at home (Ibid).
Although most of the Task Force wanted to believe that North Carolinians would
voluntarily isolate, quarantine, and/or socially distance themselves in order to pro-
tect the public from harm, some members of the Task Force were more skeptical
about North Carolinians behavior in an influenza pandemic. They noted that at
each of the four public meetings the Task Force held, in the cities of Asheville,
Charlotte, Greenville, and Raleigh, respectively, those assembled said most peoples
economic situations would determine whether they stayed home from work volun-
tarily. If their workplace was open and they needed the money to pay their bills,
people would drag themselves to work. Many members of the public suggested that
the only sure ways to prevent this state of affairs would be to force workplaces to
close or to pay workers to stay home. Of course, the wisdom of the state actually
226 R. Tong

implementing either of these suggestions is highly questionable. The former

suggestion might be financially devastating for many businesses, and the latter only
marginally less so. Businesses could ask the government to provide them with
funds to mitigate their major financial hits, but whether the government could do
this without jeopardizing the economy as a whole is an open question. During the
SARS pandemic in Canadaa very mild pandemicabout $2 billion was lost (Jha 2004).
The bulk of these dollars was confined to the Toronto area, sparing the vast majority
of Canada. In the case of an influenza pandemic, however, the economic impact
would likely not respect any borders nor be limited to a single metropolitan area.
On the whole, the people who came to one of the Task Forces public meetings
stated they were willing to forgo church services and other events, including enter-
tainment and sports events, which sometimes seem as sacred to North Carolinians
as church events. They also expressed willingness to keep their children home from
school and to tend the sick in their own homes, provided their families basic needs
were met and they received adequate instructions and supplies for tending their
infected loved ones and themselves. Once again, the NC IOM/DPH Task Force was
sobered by the fact that during an influenza pandemic, so much would depend on
society having well-developed systems to meet peoples basic needs and on having
adequate reservoirs of community goodwill and public service at hand. But did
North Carolina have such systems and reservoirs? Was it realistic, for example, to
expect family members to care for their infected relatives? Maybe. But studies
indicate that many people would prefer their families not take care of them if they
fall victim to an influenza pandemic. Should such studies prove to be true, who
would take care of these people and where? Health care facilities would be without
enough beds, and thoughts of housing infected people in Superdome-type quarters
are frightening. Should people be housed in schools? In churches? In fitness
centers? Who should staff these facilities? What about people for whom no one
seems to care? As usual, I asked myself why is it that society creates task forces to
meet all peoples, but especially vulnerable peoples, needs during an influenza
pandemic or subsequent to a major natural disaster, when that same society ignores
and/or neglects meeting vulnerable peoples needs in relatively good times? Why is
care reserved for moments of crisis? As much as I wanted to pose these fundamental
questions to the Task Force, I knew they would serve only to sidetrack it. I held my
tongue and focused on the Band-Aid at hand.

Allocation of Scarce Health Care Resources

The last major issue the NC IOM/DPH Task Force discussed was the allocation of
scarce health care resources during an influenza pandemic. In an effort to avoid
wasting time, the Task Force read the results of the Center for Disease Controls
(CDC) 2005 Public Engagement Pilot Program on Pandemic Influenza (PEPPPI)
project. The leaders of this project wanted to ascertain the general publics views
on distributing scarce vaccine during an influenza pandemic. They asked citizens
Shaping Ethical Guidelines for an Influenza Pandemic 227

to rank order the following ethical guidelines for distributing scarce vaccine fairly:
(1) Save those most at risk; (2) put children and younger people first; (3) limit the
larger effects in society; (4) use a lottery system; and (5) use the principle of first
come, first served. After much discussion, the consulted citizens concluded:
[W]ith a very high level of agreementthat assuring the functioning of society should be
the first immunization goal followed in importance by reducing the individual deaths and
hospitalizations due to influenza (i.e. protecting those who are most at risk). Because of
the still high importance of the second goal, the groups added that the first goal should be
achieved using the minimum number of vaccine doses required to assure that function. This
would allow the remaining doses to be used as soon as possible for those at highest risk of
death or hospitalization. There was little support for other suggested goals to vaccinate
young people first, to use a lottery system, or a first come first served approach as top pri-
orities. (Public Engagement Pilot Program on Pandemic Influenza 2005, 7)

Although the NC IOM/DPH Task Force learned much from the PEPPI report, it felt
it had not learned enough. The Task Force wanted to establish ethical guidelines for
a wide range of scarce medical resources. Vaccines would not be the only scarce
medical resource in an influenza pandemic. So too would be antiviral medicines,
ventilators, hospital and nursing home beds, masks, and health care professionals
time. Complicating the Task Forces allocation deliberations was the empirical fact
that during an influenza pandemic priorities inevitably shift depending on whether
prevention of disease (early stages) or treatment of disease (later stages) is central.
Thus, the Task Force would need at least two sets of allocation guidelines: one for
healthy people who needed vaccines and other preventive measures in order not to
get sick; and another for sick people who needed treatment.
The NC IOM/DPH Task Forces list of possible allocation criteria included:
1. Priority should be given to assure the functioning of society.
2. Priority should be given to reduce the incidence or spread of disease.
3. Priority should be given to reduce illness, hospitalizations, and death due to the
influenza.
4. Priority should be given to protect people with the most years of life ahead of them.
5. There should be no priority given for the distribution of limited health care
resources to ensure that everyone has an equal chance of being protected. (NC
IOM/DPH Task Force 2007, 4950)
Although most of the Task Force wanted to limit its deliberations to the five possi-
ble allocation criteria listed above, at least one member of the Task Force wanted
to add Ezekiel J. Emanuels allocation criterion of quality of life years left or the
life cycle principle (Emanuel and Wertheimer 2006, 854). The idea behind this
criterion is that each person should have an opportunity to live through all the
stages of life, with priority given to young adults over young children (around one
year old, say). Emanuels reasoning for favoring young adults over young children
is that young adults supposedly have more developed interests, hopes, and plans
than young children, but like young children have not had an opportunity to realize
them (Ibid). In other words, young adults have consciously articulated to them-
selves their school, career, marriage, and family plans, whereas young children
228 R. Tong

have not. Thus, dying during an influenza pandemic would entail more suffering
for a young adult than a young child.
For all the merits of Emanuels criterion, the objection can be raised that if a
young child survives an influenza pandemic, he/she will probably live to be a young
adult with the kind of plans noted above. Moreover, given the fact that people are
living ever longer and healthier lives, who is to say that a 40, 50, 60, 70, or even
80-year-old has had a chance to realize their hopes and interests? What if someone
wasted the first 40 years of his or her life and wanted to use the next 40 years or so
to make up for their wasted years? Why should his or her plans count less than a
young adults plans? If it adopted Emanuels criterion, would the Task Force be
perceived as ageist? To be sure, Task Force members thought that during an influ-
enza pandemic many grandparents would willingly sacrifice their lives for the lives
of their grandchildren, but this sentiment was captured in the less controversial
principle that priority should be given to protect people with the most years of life
ahead of them. Without the Emanuel principle ever coming to a vote, it gradually
disappeared from the Task Forces radar screen, resurfacing as a mention-only in
the Task Forces final report (NC IOM/DPH 2007, 50, footnote c).
In addition to largely ignoring the Emanuel criterion, the Task Force loudly
rejected the first-come, first-serve criterion. It made no sense to Task Force
members to give vaccines to people who could not benefit from them just
because they got first in line for them. Therefore, said the Task Force, many sorts
of unfairnesses built into the first-come, first-served criterion, beginning with
the fact that not everyone has the means to get to a vaccine-delivery location.
During the aftermath of Hurricane Katrina, for example, it became clear that
many of the people left behind did not have the transportation or help to flee.
Should people be penalized an influenza pandemic simply because they have no
access to transportation?
In the end, the NC IOM/DPH Task Force recommended a relatively nuanced list
of ethical guidelines for a fair allocation of scarce medical resources during an influ-
enza pandemic. The intent behind the Task Forces allocation guidelines was three-
fold: (1) to preserve lives of workers critical for the functioning of society; (2) to
prevent the spread of the disease; and (3) to treat people who could benefit from the
treatment. Having previously been advised that its ethical allocation priorities would
need to shift, depending on the state and severity of an influenza pandemic, and on
whether preventive resources (both nonpharmaceutical and pharmaceutical) or treat-
ment resources (both nonpharmaceutical and pharmaceutical) were under considera-
tion, the Task Force issued the following ethical guidelines for distributing scarce
medical resources:
(a) Allocation of vaccines (pharmaceutical prevention resources) should be made
with the primary goal of assuring the functioning of society and the secondary
goal of minimizing the spread of the disease.
(b) Allocation of nonpharmaceutical prevention resources (such as personal protec-
tive equipment) should be made with the goal of assuring the functioning of
society and preventing the spread of the disease.
Shaping Ethical Guidelines for an Influenza Pandemic 229

(c) Allocation of antivirals (pharmaceutical treatment resources) should be made

with the primary goal of minimizing illness, hospitalization, and death and the
secondary goal of assuring the functioning of society.
(d) Allocation of nonpharmaceutical treatment resources (e.g., ventilators and
hospital beds) should be made with the goal of reducing illness, hospitalization,
and deaths (NC IOM/DPH Task Force 2007, 53).
In addition to providing these four basic ethical guidelines, the Task Force stressed
that within priority groups, decisions should be based on clinical and epidemiological
factors only. They should not be based on socioeconomic status, gender, race, ethnicity,
or, more controversially, immigration/legal-documentation status. (North Carolina
has a large number of Hispanic immigrants, many with proper documentation, but
an increasingly large number without proper documents.)

Conclusion

After a unanimous vote, the Task Forces final ethical guidelines were published
with the title Stockpiling Solutions: North Carolinas Ethical Guidelines for an
Influenza Pandemic. I came away from the experience convinced that Stephen
Toulmin had it right in his now quarter-century old article, The Tyranny of
Principles (Toulmin 1981). Neither absolute adherence to principles, nor relativistic
acceptance of all moral views, is likely to result in a set of ethical guidelines that
most people in a highly diverse society can accept as substantially their own.
Rather, any such set of ethical guidelines is likely to be built taxonomically, taking
one difficult class of cases at a time and comparing it in detail with other clearer
and easier classes of cases (Toulmin 1981, 31). The NC IOM/DPH Task Force
stalled when it tried to agree on abstract definitions of terms like duty, obliga-
tion, and responsibility, but it made substantial progress as soon as Task Force
members began to share cases in which it was clear to them, for example, that a
physician had a duty/obligation/responsibility to work and cases in which it was not
clear. By comparing and contrasting clear and unclear cases, the Task Force was
able to write ethical guidelines that, in its collective estimation, would help decision-
makers handle, fairly and compassionately, all but the hardest casesthe kind of
cases which tragically result in someone or some group being harmed despite
everyones best intensions and efforts to avoid this state of affairs.
I left my role as co-Chair of the NC IOM/DPH Task Force convinced that when
an influenza pandemic arrives, the kind of ethics most likely to persuade people to
do their duty and more is not a rights-based, duties-based, or utility-based ethics,
but a care-based ethics. We human beings are a very vulnerable lot. We are radically
dependent on each other for survival and we need to view ourselves as folks in a
lifeboat in the middle or the ocean with no visible sign of rescue. If there arent
enough supplies to go around until help arrives, we can do several things: we can
ask for volunteers to jump off the boat; we can start drawing straws for who gets
230 R. Tong

pushed off the boat; we can have a majority vote about which lives are most
dispensable; or we can look in each others eyes and see ourselvesfearful,
hopeful, and in need of compassion. Then start paddling together to get to shore,
knowing that although we might not all make it, we did not turn on each other in
our panic. What we need most to weather a pandemic is an ethics of trust, reciprocity,
and solidarity. If we have that, we will have the most precious health care resource of all.

References

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http://www.pandemicflu.gov/plan/pandplan.html. Accessed December 11, 2006.
Emanuel, E. J. and Wertheimer, A. 2006. Who should get influenza vaccine when not all can?
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enza. The Keystone Center: Denver, 7.
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enza. University of Toronto Joint Centre for Bioethics.
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World Health Organization. 2007. Current WHO phase of pandemic alert. Available at http://
www.who.int/csr/disease/avian_influenza/phase/en/index.html. Accessed February 14, 2007.
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TB Matters More

Michael J. Selgelid, Paul M. Kelly, and Adrian Sleigh

Abstract Tuberculosis (TB) is the second leading infectious cause of mortality

worldwide and arguably the most important neglected topic in bioethics. This chapter:
(1) explains the ethical importance of TB, (2) documents its neglect in bioethics
discourse, (3) maps the terrain of ethical issues associated with TB, and (4) advocates
a moderate pluralistic approach to ethical issues associated with TB.

Keywords Ethics, infectious disease, tuberculosis (TB), drug resistance, quarantine,

health care access, essential medications, justice

Bioethics and Infectious Disease

Medical research resources are poorly distributed. This is illustrated by the 10/90
divide, a phenomenon whereby less than 10% of medical research resources focus
on diseases responsible for 90% of the global burden of disease (Resnik 2004).
While medical research focuses on development of profitable products, research
and development (R&D) on infectious diseases remains largely neglected. This is
because infectious diseases primarily affect poor people who cannot afford even
inexpensive medications. The worlds most urgent health care needs remain largely
neglected as a result.
An analogous misdistribution of research resources applies to bioethics. Though
infectious disease should be recognized as a topic of primary importance for bioethics,
it has historically been neglected by this discipline (Selgelid 2005; Francis et al.
2005). There are numerous reasons why infectious disease warrants the central
attention of bioethics. First, the historical and likely future consequences of infectious
diseases are almost unrivalled. Throughout history, infectious diseases have caused
more morbidity and mortality than any other cause, including war (Price-Smith
2001); and they are currently the biggest killers of children and young adults. The
continuing threat of infectious disease is revealed by the extent of AIDS, TB, and
malaria; the increasing number of newly emerging infectious diseases (such as
Ebola, SARS, West Nile Virus, and avian influenza); the growing problem of drug

M. Boylan (ed.) International Public Health Policy and Ethics, 233

Springer Science + Business Media B.V. 2008
234 M.J. Selgelid et al.

resistance (which may imply return to a situation analogous to the pre-antibiotic

era); and the specter of bioterrorism. Second, because they can be contagious and
cause acute illness and death, infectious diseases raise difficult ethical questions of
their own (Smith et al. 2004; Selgelid 2005). Public health measures for controlling
epidemics may include surveillance, mandatory treatment or vaccination, and
coercive social distancing measures such as isolation and quarantine. Because
measures such as these may conflict with human rights to privacy, consent to medi-
cal treatment, and freedom of movement, an ethical dilemma arises. How should
the social aim to promote public health be balanced against the aim to protect
human rights and liberties in the context of diseases that are to varying degrees
contagious, dangerous or deadly? Third, because infectious diseases primarily
affect the poor and disempowered, the topic of infectious disease is closely con-
nected to the topic of justice, a central concern of ethics.
Bioethics has not entirely ignored the topic of infectious disease. AIDS, in
particular, has received a great deal of discussion in the bioethics literature. In a
related development, public health ethics has become a rapidly growing subdis-
cipline of bioethics as is evidenced by a number of recent books (Coughlin et al.
1998; Beauchamp and Steinbock 1999; Gostin 2002; Boylan 2004; Anand et al.
2004; Selgelid et al. 2006; Balint et al. 2006; Dawson and Verweij 2007) and
(as of 2008) a new journalPublic Health Ethics (Oxford University Press). At
least some of this literature has emphasized infectious disease in particular. With
the exception of AIDS, however, bioethics discussion of infectious disease
remains in its infancy, and coverage of topics has been patchy at best (Tausig
et al. 2006). Much of the emerging literature has focused on SARS, pandemic
influenza, and bioterrorism in particular. There has also been an increase in
relevant debate about intellectual property rights in pharmaceuticalsand the
barriers patents pose to medication access in poor countries (Schklenk and
Ashcroft 2002; Cohen and Illingworth 2003; Sterckx 2004; Pogge 2005; Cohen
et al. 2006).

Neglected Disease

Tuberculosis (TB) is a bacterial infectious disease that is usually spread by

coughing. TB illness is debilitating in the short term; and it is associated with
high mortality if untreated, and with significant disability even if successfully
cured. Whilst pulmonary TB (disease affecting the lungs) is the most common
and most infectious form of the disease, TB can affect any part of the body. TB
is strongly associated with poverty and is common in less-developed countries,
particularly in Asia, Africa, and South America. There has been a resurgence of
TB in relation to the HIV/AIDS pandemic, particularly in sub-Saharan Africa
(Dye et al. 2007). The public health implications of TB are enormous. Until
recently TB was the worlds leading infectious cause of mortality, and it is now
second only to AIDS.
TB Matters More 235

It is surprising and unfortunate that there has not been much focused discussion
of ethical issues associated with TB,1 which is arguably the most important
neglected topic in bioethics. Because TB kills nearly as many people as AIDS each
year, one would expect TB to receive a proportionate amount of discussion in
health ethics literature. There are, furthermore, good reasons for thinking that the
problem of TB is even more ethically important than AIDS. In the vast majority of
cases TB drugs can provide cure, and they are much less expensive than AIDS
medications. While 1.6 million people die from TB each year (WHO 2007a) and
2.1 million die from AIDS (UNAIDS 2007), the former deaths are, economically
speaking, much easier to prevent. A standard course of TB medication can cost as
little as US$10 or US$20, and TB therapy is considered to be one of the most cost-
effective health care interventions. In best case scenarios, AIDS medication
costs as little as $100 for a year of treatment in developing countries, but it often
costs much more. In the case of AIDS, furthermore, lifelong treatment is required
because no cure exists. Given cost considerations, the case for increasing access to
TB medication appears stronger than the case for increasing access to AIDS
medication (which is not to say that the case for increasing access to AIDS medication
is not itself enormously powerful). In 1998, only 56% of those in need had access
to TB therapy recommended by World Health Organization (WHO), and the rate
was only 23% just a few years earlier in 1995 (Lienhardt et al. 2003). There have
been impressive gains in access to TB services in many countries in recent years,
and approximately 62% of those in need were receiving treatment in 2007 (Floyd
2007). Significant gaps remain, however, in many of the countries where TB is
most prevalent (Dye et al. 2007).
A final reason for thinking that TB is ethically more important than AIDS is that
the former, being airborne, is both contractible via casual contact and much more
contagious. While behavior modification (with respect to IV drug use and sexual
practice) can essentially eliminate the risk of infection with AIDS, TB can be
passed from one individual to another via coughing, sneezing, and even talking. In
many ways, then, the threat to innocent individualsand public health in
generalis greater in the case of TB.
Though the ethical importance of TB at least rivals, if it does not surpass, the
ethical importance of AIDS; the former has received comparatively little attention
from bioethicists. The lack of attention to ethical issues associated with TB is
revealed via searches on the Internet. A PubMed search of titles and abstracts
(conducted in October 2007) for the terms ethics and AIDS yielded 2,998
entries; while a similar search for the terms ethics and tuberculosis yielded
only 179. Rather than reflecting difference in ethical importance, the disproportionate
amount of bioethics attention to AIDS in comparison with TB reflects the fact that

1
A recent exception was the workshop organized by Anne Fogot-Largeaultwith participation of
Mary Edginton, Lourdes Garcia-Garcia, and Brigitte Gicquelon TB Ethics at the 8th World
Congress of the International Association Bioethics (2006) in Beijing. We also admit that the
New York epidemic of the 1980s and 1990s received some important coverage.
236 M.J. Selgelid et al.

the former disease has affected an economically powerful and articulate community
and has been much more highly politicized.
The global TB status quo, meanwhile, is alarming. The World Health
Organization (WHO) declared TB a global health emergency in 1993. One third of
the world population is currently infected with latent TB. Approximately nine
million people develop active illness each year, and there are between 16 million
and 20 million persons with active tuberculosis at any one time (Gandy and Zumla
2002, 385). Though a cure for TB has existed for over 50 years, and though in the
1950s TB was believed to be eradicable, TB is now more prevalent than in any
previous period of human history (Gandy and Zumla 2002, 385). The TB burden
is highest in Asia, which accounts for two thirds of the global burden of TB (WHO
2006b). The Southeast Asia Region has the largest number of new incident cases,
accounting for 34% of incident cases globally. The incidence rate in sub-Saharan
Africa, however, is nearly twice as highat nearly 350 cases per 100,000 popu-
lation (WHO 2007b). Like most other infectious diseases, the burden of TB is
most heavily shouldered by the poor: 95% of TB cases and 98% of TB deaths occur
in developing countries (Gandy and Zumla 2002). This is because the poor lack
good nutrition, and this weakens their immune systems. It is also because crowded
living and working conditions, and lack of sanitation and hygiene, increase chances
of exposure and infection. Because the poor so often lack access to (even inexpensive)
medical care, they are more likely to suffer adverse outcomes when infection
occurs. Direct and indirect costs of illness can have a catastrophic effect on TB
sufferers and their families (Bates et al. 2004; Jackson et al. 2006). Matters
have been made worse by the growing HIV/AIDS epidemic. Those living with
HIV/AIDS are much more likely to contract TB, and more likely to develop
severe illness when they do (Harries and Dye 2006).
Though the impact of TB is most heavily felt in developing countries, the
emergence and spread of multidrug-resistant TB (MDRTB) poses serious threats to
developed nations as well. A primary cause of drug resistance is the failure of
patients to always complete a full course of TB medication. This often occurs in
developing countries when patients cannot afford to continue therapy, cannot afford
time off work to visit health providers, or cannot afford travel to clinics. Another
cause of drug resistance is the weakness of health care infrastructures in poor
countries. Patients often fail to complete therapy because hospitals and clinics in
poor countries fail to maintain a steady supply of standard TB medications (Farmer
1999; Farmer 2003). Drug resistance is also driven by the market presence of drugs
that are low quality, old, or often counterfeit.
Like ordinary TB, drug-resistant TB is contagious. With increased global trade
and travel, drug-resistant TB spreads frequently from country to country. Though
it is usually curable, MDRTB requires longer and more expensive treatment.
Ordinary TB can be treated with a six month course of medication costing
US$1020. MDRTB takes two years to treat, and treatment can be up to 100
times more expensive. The second-line medications used to treat MDRTB are,
furthermore, both more toxic and less effective than the first-line drugs used to
treat ordinary TB.
TB Matters More 237

The problem of untreatable TB is suddenly on the rise. In 2006, the US Centers

for Disease Control and Prevention (CDC) and WHO announced the emergence
and spread of extreme or extensively drug-resistant TB (XDR-TB). MDRTB is
defined as TB resistant to at least two (namely isoniazid and rifampicin) of the four
first-line TB medications. XDR-TB is defined as TB resistant to at least two of the
four first-line TB medications and at least two of the six second-line medications
(a fluoroquinolone and an injectable agent; CDC 2006; WHO 2006a). A recent
study showed that 20% of TB isolates from around the world were MDRTB and
that 10% of these were XDR-TB. XDR-TB was found in every region, and the
study showed that isolates of MDRTB obtained from the USA, Latvia, and South
Korea were, respectively, 4%, 19%, and 15% XDR-TB (CDC 2006). The most
dramatic epidemic of XDR-TB is currently underway in South Africa. A study in
March 2006 showed that 41% of suspected patients in Tugela Ferry were infected
with MDRTB and that 24% of these had XDR-TB. Of the 53 patients with the
latter, 52 died within 25 days (MSF 2006). Many are worried that XDR-TB may
swiftly put an end to all hope of containing the [AIDS] pandemic [in Africa]
through treatment. According to one expert: There is no point investing hugely
in ARV [anti-retro viral] programmes if patients are going to die a few weeks later
from extreme drug-resistant tuberculosis (Boseley 2006). Implications of XDR-
TB for the international community are starkly revealed by the CDCs conclusion
that XDR-TB has emerged worldwide as a threat to public health and TB control,
raising concerns of a future epidemic of virtually untreatable TB (CDC 2006).

Mapping the Terrain of Ethical Issues Associated with TB:

A Research Agenda

Bioethics research in the context of TB should address the following issues.

Duty to Treat

A common topic in bioethics discussion of infectious disease has been the question
of health workers duty to treat patients infected with diseases that pose risks to
health workers themselves. A related question concerns the duty of society, or the
health care system, to provide safe conditions for health workers through provision
of masks, room ventilation, and other infection control measures in hospitals and
clinics. Most of the debate has thus far focused on AIDS, SARS, and avian influenza.
The existing literature reveals that there are no simple answers to these kinds of
questions and that different issues arise in the context of different diseases (Reid
2005). Though these questions are pertinent to TB, given that it is highly contagious
and increasingly dangerous in the context of MDRTB and XDR-TB, and/or when
health workers are living with HIV (Cobelens 2007)they have in the specific
238 M.J. Selgelid et al.

context of TB received little if any dedicated discussion in mainstream bioethics

literature. Bioethics should examine the extent of risk involved with treating TB
patients; the nature and extent of health care workers duties to face such risks;
possible means (and ethical justification) for reducing such risks through improvement
of infection control in health care settings; and the propriety of rewarding health
workers willing to face greater risks (Savulescu, in discussion) and/or the propriety
of compensating those who actually become infected on the job (University of
Toronto Joint Centre for Bioethics 2005).

Clinical Research

A major topic of debate in the context of HIV/AIDS research has been the question of
what should count as an ethically acceptable control arm in studies involving human
subjects. Most of the attention has focused on placebo controlled studies of mother-to-
child transmission of HIV in Africa. Critics argued that these studies conflicted with the
Declaration of Helsinki requirement that patients in the control arm of a study should
receive the best proven or best current therapy for the condition in question (Lurie
and Wolfe 1997). Others argued that it would have been too expensive to provide such
treatment in developing world contextsand that no harm was done because patients
were denied no treatment they would have received if they had not participated in the
studies (because the standard of care in poor countries was no treatment to prevent verti-
cal transmission of HIV). Given that the WHO has recently declared that the standard
of care for MDRTB requires provision of second-line drugs, it will not be surprising,
given what commonly occurred in the context of HIV, if there are proposals for studies
where control arm subjects would not receive this expensive, high level of care (appar-
ently) still required by the Declaration of Helsinki. Would it be wrong to deprive control
arm subjects of second-line drugs if they would not receive them if they did not partici-
pate in the study in questiongiven the poverty situation in the local context? How are
the ethical issues in the context of TB similar to, or different from, those that arose in
the context of HIV/AIDS?
Another issue arising in clinical research involves the management of third-party
risks. A study of a new drug for resistant strains of TB, for example, may pose risks
to third parties. If the investigational drug is not effective, then a patient-subject
who receives it may remain infectious and thus endanger family members and other
close contacts. Isolation of the patient-subject or informed consent of third parties
might thus be called for. This general issue has been neglected by research ethics
guidelines (Francis et al. 2006).

Treatment Exclusion

There have been reports of prescription practices in poor countries where health
workers decide to exclude TB patients from treatment in cases where it is
believed that the patient is unlikely to complete therapy (Singh et al. 2002). While
TB Matters More 239

withholding treatment from unreliable patients may serve the aim to avoid
promotion of drug resistance, a practice like this may be inappropriately discrimi-
natory. Such a practice may also have counterproductive results if infectious
patients remain at large in the community. Because the ability of health workers
to make sound judgments about such matters is suspect, the extent and quality
of institutional policy calling for patient exclusion warrants further analysis.
In addition to concerns about unjust discrimination, a major question is whether
or not, or why, it is reasonable to think that the harm to excluded individuals
would be outweighed by greater goods to society in the way of public health.
These are partly, though not entirely, empirical questionsi.e., about what the
actual harms and benefits are (to individuals and society, respectively). The more
ethico-philosophical question is how benefits to society should be weighed
against harms to individuals.

Obligation to Avoid Infecting Others

If there is a duty to do no harm, then infectedor potentially infectedpersons

have duties to avoid infecting others (Harris and Holm 1995; Verweij 2005).
This interesting and important topic has received surprisingly little attention in
general, and discussion to date has primarily focused on AIDS and influenza.
Bioethics should examine the extent to which a duty like this applies in the
context of TB in particular. Because it would be unreasonable to expect potentially
infected persons to take all possible measures to avoid infecting others, appropri-
ate limitations to the duty must be considered. Because TB is transmissible via
casual contact, anyone who has been breathed or coughed on by someone who
might (for all one knows) be infected with TB should, epistemologically speak-
ing, consider herself to be potentially-infected. But that means almost all of us!
(This is just one of the ways in which the case of TB is different from AIDS.)
Even those who actually have been in (limited) contact with someone sick with
active TB, however, will usually not themselves become infected as a result.
Though potentially deadly and considered highly contagious, TB is not nearly so
contagious as the flu. (This is just one of the ways in which the case of TB is
different from flu.) To what extent should someone who knows she has been
exposed to TB limit her interactions with others afterwards? The answer will partly
depend on whether we are talking about ordinary TB, MDRTB or XDR-TBif
these details are known.

Third-Party Notification

In cases where a contagious patient fails to take adequate precautions to avoid

infecting othersand fails to warn close contacts about his infectious statusthen
the question of whether or not the health worker should inform identifiable third
240 M.J. Selgelid et al.

parties at risk arises. On the one hand, notification of third parties about a patients
health status would breach the widely acknowledged patient right to confidentiality.
On the other hand, failure to warn could (especially in the context of XDR-TB)
conflict with the innocent third partys right to lifewhich many would say is more
important than the incautious patients right to confidentiality. This matter is
complicated because a routine practice of breaching confidentiality may decrease
trust in the health care system, reduce health-seeking behavior, and thus drive the
epidemic underground. What the actual public health implications of third-party
notification would be is an empirical question that warrants further study.

Domestic Surveillance

Mandatory TB testing in schools, the workplace, or elsewhere in the community

may potentially conflict with the right to privacy. If information concerning the
health status of individuals is not well protected, then stigma and discrimination
will result. Surveillance measures, on the other hand, are sometimes important to
the protection of public health. Bioethics should consider the extent to which
current surveillance measures areor the extent to which more wide-reaching
surveillance measures would bejustified in the context of TB, especially now that
MDRTB and XDR-TB are growing threats to global public health.

Migrant Screening

It is common for countries to screen migrants for TB before granting entry visas.
Some have questioned the public health efficacy and/or cost-effectiveness of a
practice like this in comparison with other means of TB control (Coker 2003).
Whilst identification of active disease offshore is a commonly used method for TB
control in countries with a low prevalence of TB (and sometimes countries with
high prevalence), it is not always possible to perform due to the lack of resources
or a lack of time prior to arrival (Coker 2003). Additionally, one-off screening for
TB with x-ray does not completely eliminate the risk of TB transmission to the
public in the receiving nation due to the lifetime latency of the disease (MacIntyre
et al. 1997). The offshore TB screening policy relies on a user pays philosophy,
where visa applicants are responsible for the costs incurred. Aside from questions
of equity, where the poor who are most likely to have TB are also least likely to be
able to pay for the screening tests, this model works well when a private sector
health system is in operation. The International Organization for Migration (IOM)
has called for a paradigm shift from exclusion to inclusion to address this,
amongst other unintended effects of premigration screening for the benefit of the
migrant and the host nation (Maloney 2004). In many countries from which
refugees are resettled, there are no private for-profit radiological or microbiological
TB Matters More 241

facilities and government clinics are stretched to capacity. Is it appropriate for

developed countries to shift costs for their public health onto the overburdened
health systems of other, less well-resourced, countries? Additional ethical issues
arise in the context of asylum seekers. This form of migration has posed enormous
problems in the northern hemisphere. In situations like this, host countries duties of
beneficence potentially conflict with duties to protect public health. Ethical issues
associated with migrant screening in the context of infectious disease are a generally
neglected area of discussion that is becoming increasingly important in the
contemporary era of globalisation and emerging infectious diseases. These
issues are especially pertinent in the context of TB.

Social Distancing

In the past, patients with infectious TB were isolated in sanatoria for prolonged
periodsand sometimes even for life. This was done to protect others from infection.
Even today, in many countries, it is common to isolate patients with pulmonary
symptoms (i.e., active TB) until they are deemed uninfectioususually about
two weeks after therapy is started. Such detention is usually brief and voluntary.
It is common, however, to coercively confine patients with active TB, and some-
times patients with inactive TB, when they refuse to take their medicine or when it
is believed they are unlikely to adhere to treatment regimens (Coker 2000).
Bioethics should consider the extent to which (coercive) restriction of movement
is ethically justified in the name of public health protection against TB. Of particular
importance is the question of what should be done with XDR-TB patients, who
pose threats of infection with an especially dangerous form of TB whether they take
their medicines or not. Defenders of confinement in the context of treatable TB
sometimes suggest that confinement is justified when patients are at least given a
choice between confinement and treatmentthe idea being that this respects their
autonomy (Bayer and Dupuis 1995). If XDR-TB patients are confined because they
are untreatable, then no autonomous choice would remain. Though this does not go
to show that mandatory confinement is therefore inappropriate, the point is that the
question of what to do with XDR-TB patients is not automatically settled by
conclusions about what to do with noncompliant patients with treatable TB.
Additional new questions are whether or not, the extent to which, or the conditions
under which, it would be ethical to quarantine the large number of people exposed
to, though not known to be infected with, XDR-TBor those suspected, though not
known, to be infected with XDR-TB (Singh et al. 2007)while diagnostic
confirmation is awaited.
Coercive long-term confinement may again become common in the case of
patients actually diagnosed with (untreatable) XDR-TB. In a widely reported case in
Arizona, for example, an XDR-TB patient has been detained in a prison hospital for
over a year (Democracy Now 2007). And there are already calls in Africa for a return
to compulsory sanatoria for such patients (Sakoane 2007). If the spread of untreatable
242 M.J. Selgelid et al.

XDR-TB becomes sufficiently alarming, we may be faced with quarantine and con-
finement at a scale not seen for decades. In 2007 a patient suspected of infection with
XDR-TB was subjected to the first US federal isolation order since 1963.
Among other questions, the following should be further considered: (1) the
extent to which coercive social distancing measures are justified in light of the
available evidence (or lack thereof) regarding their efficacy and (2) arguments calling
for compensation provision to those whose liberties are coercively restricted.
It is true that untreatable TB was the norm prior to development of cures in the
middle of the 20th century, and we should examine historical debates regarding the
social acceptability of confinement and so on that took place in public health circles
in the pre-antibiotic era. No developed discipline of bioethics existed at that time,
however, and so it remains to be seen how policy decisions made then will be viewed
under the lens of rigorous ethical analysis. More importantly, given population
growth and globalization, the contemporary world is different from that when
untreatable TB previously existed. Because population dynamics have changed,
there is no reason to assume that public health solutions to untreatable TB in the past
(even if it is determined that such policies were ethically and epidemiologically
sound at the time) will be appropriate to the contemporary world.

Mandatory Treatment and Ethical Issues Associated with DOTS

As indicated above, it is commonly the case that (treatable) patients are

required to either undergo therapy or be held in confinement. Insofar as the
threat or actual use of force is involved, TB treatment involves coercion and
thus conflicts with individual autonomy (despite the fact that patients are usually
given at least some choice in the matter). The worldwide standard of care for
TB treatment is known as Directly Observed Therapy, Short Course (DOTS).
Among other things, DOTS involves health or social workers observation of
patients medication-taking; and patient cooperation is (often) part of what is
required to avoid detention. Though DOTS has (arguably rightly) been hailed
as a great success in global TB control (partly because it promotes patient
compliance and thus helps prevent drug resistance) ethical issues are raised
by the coercion involved. It is generally thought that informed consent to
medical treatment is importantand that it must be voluntary. Autonomy,
however, may be outweighed by societal benefits if the stakes are sufficiently
high. Additional issues involve threats to privacy and dangers of stigmatization
in contexts where DOTS practices are visible to the community; and the costs/
inconvenience of DOTS in comparison with unmonitored treatment (especially
when we are talking about reliable patients). Though issues associated with
mandatory treatment and DOTS have perhaps received more bioethics attention
than others considered in this chapter, much of the debate to date has focused
on the limited context of New York City in the 1980s and 1990s (see Bayer and
Dupuis 1995 and reference therein).
TB Matters More 243

Coercive in the Prevention of Zoonosis

Coercion is also involved in attempts to remove Mycobacterium bovis (bovine

TB) from the food supply in rich countries by culling infected herds and pasteur-
izing milk. In part this is done to increase the safety and value of bovine (or ovine
and other herbivore) products, especially milk and cheese. In poor areas of the
world with ongoing high rates of TB among cattle or buffalo and use of raw milk
products, bovine TB still causes much disease among humans, usually as an extra-
pulmonary infection of the throat (scrofula), stomach, abdomen or bones. Although
control of animal TB may seem to be of obvious benefit to a community, the
affected farmers may object to testing and culling of their infected animals, even
when paid compensation, if herds cannot easily be replaced with disease-free
equivalents. Also, farmers may be emotionally attached to the animals, especially
dairy cattle, the main target for control of bovine TB. Another issue arises with
compulsory pasteurization of milk. Some people even break the law to exercise
their right to consume natural products. How important are these libertiesand
are they outweighed by public health benefits requiring coercion? Again these are,
but only partly, empirical issues.

Justice and the Distribution of Health Resources

As a disease of poverty, TB raises issues of international distributive justice.

Though sufficient resources for health improvement are lacking in poor countries,
there are numerous powerful moral (egalitarian, utilitarian, and libertarian) and
self-interested reasons for wealthy nations to do more to help improve health care
in poor countries (Selgelid OnlineEarly 2007). These issues are complex and inter-
twined with the above questions regarding liberty violating public health measures.
If health care provision and thus global health were better to begin with, for exam-
ple, then the occasions upon which liberty infringing public health measures are
called for would arise less often.
In addition to improving access to existing medications, increased R&D for
drugs and diagnostics is sorely needed in the fight against TB. At present,
[w]orldwide only $20 million is spent annually for clinical trials for TB drug[s]
compared to around $300 million for HIV drugs in the US alone (MSF 2007).
Bioethicists should debate recent proposals (Pogge 2005; Kremer and Glennerster
2004) and current activities (Moran et al. 2005) aimed at stimulating R&D on
neglected diseasesand the extent to which they are apt for TB in particular. They
should also examine the extent to which targeted funding for TB control is war-
ranted in comparison with other infectious diseases. Because it has been argued that
donor aid should aim to improve developing countries general health care infra-
structuresand improvement of general health indicatorsrather than targeting
particular diseases such as AIDS and TB (Garrett 2007), the propriety of targeted TB
funding should be evaluated. Because infectious diseases, including drug-resistant
244 M.J. Selgelid et al.

infectious diseases such as XDR-TB, fail to respect international borders, bad

health in poor countries threatens global public health in general. The strength of
associated self-interested reasons for wealthy nations to help reduce TB in poor
countries (through targeted or untargeted funding) should therefore, finally, be a
major focus of analysis.

A Moderate Pluralist Ethical Approach to TB Control

Our recommended approach to ethics and infectious disease may be characterized

as moderate pluralism. This approach aims to identify the plurality of (intrinsic)
values at stake in the context under study and strike a balance between potentially
conflicting values without giving absolute priority to any one value in particular. In
the context of XDR-TB, for example, the utilitarian aim to promote public health
might best be promoted through coercive confinement of infected patients. Such a
policy, however, would conflict with apparent rights and liberties of infected indi-
viduals; and it is not generally believed that individual rights and liberties should
be sacrificed whenever this would promote the greater good of society. Resolving
a conflict like this requires assessment of the overall threat to society, assessment
of the centrality/importance of the rights under threat, and consideration of features
that might make one value (i.e., utility) or the other (i.e., liberty) especially impor-
tant in the context in question. Most ethicists, policymakers, and ordinary citizens
would, upon reflection anyway, deny that either of these two social values should
always be given absolute priority over the other. The ideal solution to conflict
between values is to bypass the conflict to begin with. We should thus, whenever
possible, aim for a policy that promotes both utility and libertyand also equality,
another legitimate social valueat the same time. TB reduction via increased
health care provision would reduce the frequency of occasions where we are faced
with the conflict between utility and liberty under consideration; and it would likely
also promote equality (given that TB reduction would generally involve improving
the situation of those who are worst off).
This is not to say that the initially considered conflict would never eventuate if
TB reduction occurs. Difficult decisions will need to be made in cases where con-
flict is unavoidable; and a principled rationale for favoring one value over another
is needed in cases of conflict. One idea is that the aim to promote utility should be
weighted more heavily as a function of the extent to which utility is threatened.
Another idea is that the weight of a right/liberty should be weighted as a function
of its centrality. More basic rights/liberties deserve more protection than others.
When catastrophe would result from protection of the most basic rights, however,
then even these must be compromised. We sometimes think it is appropriate to vio-
late the most basic right of alli.e., the right to life in time of war.
When rights violations are found to be necessary in the context of TB, amends
can be made by compensating individuals whose rights are compromised (Ly et al.
2007). The living conditions of those confined should be made as comfortable as
TB Matters More 245

possibleand those who succumb to liberty restrictions should perhaps receive

additional (e.g., financial) rewards. It would be unfair to expect coerced individuals
to shoulder the entire cost of societal benefit. If a net social dividend results from
liberty infringement, then part of this should be returned to the victims of coercive
social policy. This is a matter for reciprocity (University of Toronto Joint Centre for
Bioethics 2005).

Acknowledgment We thank the Brocher Foundation in Hermance, and the Institute for
Biomedical Ethics at the University of Geneva, in Switzerland, for hosting the lead author as a
visiting researcher during the period this chapter was written.

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Ethics of Management of Gender Atypical
Organisation in Children and Adolescents1

Simona Giordano

Abstract Atypical gender identity organisation (AGIO) is a serious medical con-

dition in which the phenotypical appearance is experienced as alien by the person
affected. AGIO is source of great distress, and obtaining medical treatment is for
many a life-or-death matter. Many of those who cannot receive treatment are at high
risk of suicide. AGIO is not only a problem of personal health, but also a public
problem, because sufferers are often exposed to discrimination, abuse and violence,
and each act of discrimination, abuse and violence is a public issue. Thinking about
AGIO represents a great challenge for us all. It involves rethinking about gender
identity in a more comprehensive way, inclusive of phenomena that go beyond the
classic gender divide male-female, and thinking of ways of ensuring all citizens,
whatever their gender identity, a secure and peaceful place in society. I explain
what AGIO is, how it manifests itself, and provide a brief history of AGIO. I offer
an overview of risks and benefits of available treatments. I analyse the ethico-legal
issues that surround AGIO. In particular, ethics of interfering with natural develop-
ment, competence in minors, validity of informed consent, role of the family, moral
and legal responsibility of professionals for omission of treatment and ageism.
I conclude that medical treatment should be offered, even to minors just after the
onset of puberty, if the child has a profound and persisting AGIO, if she/he is compe-
tent to make a judgement on the matter, and if treatment is likely to enhance his/her
quality of life. Deferring treatment till adulthood is not a morally neutral option, and
it is indeed unethical, if the child is likely to be harmed by pubertal development.

Keywords Gender identity disorder, suspension of puberty, acts/omission, ageism,

competence in minors, informed consent, international guidelines for treatment of
gender identity disorder
Imagine how you would feel if, tomorrow morning, you were to wake up to find
yourself in an male body, with a mans voice and a mans face looking back at you
from the mirror, with early morning beard and moustache stubble, with no breasts,

1
Part of this chapter relies on Giordano (2008a, b).

M. Boylan (ed.) International Public Health Policy and Ethics, 249

Springer Science + Business Media B.V. 2008
250 S. Giordano

an Adams apple, large male feet and hands, a body covered in thick, black hair and
a penis and testicles. [] Do you think that youd feel as if you were going crazy?
[] This terrible thing has happened to me and it is worse than you could ever
imagine (A patient, personal communication)

Introduction

Atypical gender identity organisation (AGIOterm first used by Di Ceglie 1995,

Chapter 2) is a rare condition in which individuals experience their gender iden-
tity as being incongruent with their phenotype [physical appearance]. The personal
experience of this discomfort is termed gender dysphoria. In its profound and
persistent form, it is known as transsexualism (GIRES et al. 2006).
In many cases, the discomfort begins in childhood. Between 40 and 70 new children
a year are referred to specialised clinics in the UK, whereas the University Hospital in
Gent (Belgium) reports seeing one new child a week, and the numbers of applications
seem to be growing exponentially (De Sutter 2006, personal communication).
AGIO is not just a problem of private health. It has important public repercus-
sions. Growing in a body that is experienced as inappropriate is for many sufferers
terrifying and intolerable, and taking whatever step is necessary to undergo transi-
tion to the other gender is for many a life-or-death choice. Many of those born in
areas of the world where early treatment and sex-change surgery are unavailable
emigrate clandestinely in countries where they will be able to transition to the other
gender; they may become prostitutes in order to pay for reassignment surgery, thus
exposing themselves to HIV, STDs, imprisonment, violence and abuse. Sometimes,
in order to survive in the cold winter nights on the pavement, they resort to heroin, thus
again adopting criminalised behaviours and exposing themselves to life-threatening
conditions (Farias 1994). Even those who do not need to emigrate often do not
receive timely medical treatment, and end up buying hormones off the illegal
market and injecting them at unregulated dosages and without medical supervision
and monitoring. Transgender people are also particularly at risk of abuse and
violence. At school, bullying towards children with unusual gender/sex orientations
is common practice (GLSEN 2005; see also Information for Schools, at www.
gires.org.uk/Web_Page_Assets/frontframeset.htm), and homophobic bullying has
severe long-term effects (Adams et al. 2004; Grossman and DAugelli 2006). There
have even been cases of children killed by their peers by reason of their atypical
gender identity (Di Ceglie 2000, p. 466). Transgender adults are also at high risk
of violence; it is reported that 39 transgender people were killed in 2003 in brutal
ways (December 4, 2003, issue of Workers World newspaper http://www.workers.
org/ww/2003/trans1204.php). It cannot be claimed that these people choose risky
lifestyles and willingly expose themselves to violence: Those who do not receive
treatment are left without recourse, and people without recourse are not free
(Korsgaard 1993, p. 59).
Medicine now offers means to help children and adolescents with AGIO, and thus
help to limit discrimination, ill health and criminalised behaviours. These are
Ethics of Management of Gender Atypical Organisation in Children 251

puberty suppression, cross-sex hormones, surgery and, of course, psychological sup-

port. Cross-sex surgery is nearly invariably offered only to adults (one known excep-
tion is Natalia, from Argentina, who convinced the Courts to grant her permission to
obtain cross-sex surgery at the age of 17; El Mundo, www.elmundo.es). However, if
AGIO is tackled early enough, when the child has not yet completed pubertal devel-
opment, he or she can be assisted in his/her gender development in a monitored and
supervised way, with great advantages in terms of physical and psychological health
as well as social functioning. With puberty suppression and administration of cross-
sex hormones, children and adolescents would be spared the anguish of developing
an unwanted body and could explore their real gender identity under medical super-
vision. This would protect them from taking hazardous steps to obtain medical help
from non-medical sources and from spiralling down into depression, suicidality and
even in the criminal system. Later they could undertake much less invasive surgery,
as puberty suppression would prevent development of unwanted body characters of
the biological gender, which only invasive surgery can remove.
Treatment of children and adolescents with AGIO is surrounded by important
ethical and legal issues (see Re Alex [2004] FamCA 297. Reserved filesby Court
Order the File Number and names of Counsel and Solicitors have been suppressed
narrate the long and heart-breaking story of Alex, who underwent a long and com-
plex court case, at the age of 13, to receive early treatment). In order to understand
whether it is ethical to offer treatment to minors with AGIO, it is necessary to clar-
ify what AGIO is, what the condition of those affected is and the benefits and risks
of available treatments.
I will argue that there are strong ethical reasons to suspend the development of
children with profound and persistent AGIO at early stages of puberty, if deferring
treatment exposes the child to great suffering and harm. It is important to bare in
mind that many untreated children would rather take their life, and indeed try to
take their life, rather than growing in the alien body. Considering the devastating
effects of spontaneous development for these children, I suggest that, in order to
assess the ethical legitimacy of puberty suspension, the overall welfare of the child
needs to be considered, and not just the potential risks and benefits of the medica-
tions. If the child is competent to make a decision on the matter, if treatment is
likely to prevent psychological suffering, to reduce painful, costly and more risky
treatments in adulthood, to improve the patients physical, psychological and social
adaptation and to promote a overall better quality of life for the patient, treatment
should be offered. Far from being an ethically neutral option, deferring treatment
in these cases would be unethical.

Brief History of AGIO

Gender identity disorder was first included in the DSM-III in 1980. The notion of
transsexualism is also relatively recent. Harry Benjamin, an endocrinologist who
worked in New York, introduced it in the 1950s. Although the nosology is recent,
AGIO as always been part of human history (Mills 2006):
252 S. Giordano

God, said the Jewish chronicler, created man in his own androgynous image male and
female created he them, for in him both were united. Mohammed on his second coming,
says the Islamic legend, will be born of a male. Among Christians, Paul assured the erring
Galatians, there was no such thing as male or female all one person in Christ Jesus.
The Hindu pantheon is frequented by male-female divinities, and Greek mythology too is
full of sexual equivocations, expressed in those divine figures who, embracing in them-
selves strength and tenderness, pride and softness, violence and grace, magnificently
combine all that we think of as masculine or feminine.
[] The Phrygians of Anatolia [] castrated men who felt themselves to be female,
allowing them henceforth to live in the female role, and Juvenal, surveying some of his own
fellow-citizens, thought the same plan might be adopted in Rome. [] Hippocrates
reported the existence of un-men among the Scythians: they bore themselves as women,
did womens work, and were generally believed to have been feminized by divine interven-
tion. In ancient Alexandria we read of men not ashamed to employ every device to change
artificially their male nature into female even to amputation of their male parts.
(Morris 1974, pp. 3538)

The Night, sculpted by Michelangelo (Di Ceglie 1998b, p. 185), represents someone
with both male and female attributes. In the representation of The Night, gender
ambiguity is pictured as nearly a dreamy state.
Although gender ambiguity has always been part of human history, arts and
mythology, western medicine has been caught unprepared to provide help to those
who need to deal with the discordance between their gender identity and their sex
characteristics. Jan Morris, who sought assistance for transition to the other gender
in the 1950s, tells us of expensive and fruitless trips to Harley Street in London,
visiting psychiatrists and sexologists:
None of them she wrote knew anything about the matter at all, though none of them
admitted it. [] Could it not be, they sometimes asked, that I was merely a transvestite, a
person who gained a sexual pleasure from wearing the clothes of the opposite sex, and
would not a little harmless indulgence in that practice satisfy my, er, somewhat indeter-
minate compulsion? Alternatively, was I sure that I was not just a suppressed homosexual,
like so many others? (Morris 1974, p. 40)

Gender ambiguity struggles to find space among our mental categories (on this see
Connolly 2003). The default assumption seems to be that a person is either a man
or a woman, and that if a person transitions to the other gender he or she will then
unequivocally belong to the other gender. This, however, is not the case for many
people. Many of us live in a chiaroscuro; there are female and male parts to our
selves, and gender identity for many of us includes both of these parts. The polari-
sation male/female fails to mirror the reality that many people experiencewhere
they have male and female facets and they cannot force their identity to one or the
other gender. Alice Dreger writes:
Some people really are born male by all conventional standards and really do end up with
the gender identities of women. And vice versa. And some peoples gender identities really
do seem to change over time. Moreover, some people never settle into a simple male or
female gender identity. But all these people are forced by the revisionist history required
by the state and most of the medical profession and everyone else to tell only the man
trapped in a womans body or woman trapped in a mans body story. They got my sex
Ethics of Management of Gender Atypical Organisation in Children 253

wrong at the start is the only story that seems to be acceptable. Okay, you can be trans, but
only if you cooperate in changing your whole history so that you fit into the two-sex model.
(Dreger 2006)

This quote refers to the New York Citys proposal to allow people who have not
undertaken cross-sex surgery to change their birth certificates to match their
innate gender identities. Although this theme is different from the topics of this
chapter, Dregers quote tells something of relevance here. AGIO is not necessarily
an illness (having the wrong body), and is not necessarily a condition in which
the person wants to belong to other gender. Gender organisation is individual and
subjective, and can be monothematic or comprehensive. AGIO, thus, might not
necessarily mean being born in the wrong body: it might also signify a more
complex process of identification with different aspects of both genders. It is
mistaken to assume that gender identity must be, for every person, either femi-
nine or masculine.

Intra-psychic, Physical and Social Dimensions of AGIO

AGIO has three interrelated dimensions: intra-psychic, physical and social.

Intra-psychic dimension

Di Ceglie has described the intra-psychic experience of children as follows:

Their interests, their play, their fantasies, their way of moving or talking, their
way of relating to friends, or their way of seeing themselves do not fit the body
that they have and the way that other people perceive them as a consequence of
their bodily appearance. One might say that their psyche lives in a foreign body.
[] The child feels driven to live in this confusing and bewildering condition
(Di Ceglie 1998, p. 186).

Physical Dimension

AGIO does not generally cause physical alterations. AGIO children generally
develop normally, in accordance with their biological sex. It is this physical
dimension that horrifies the sufferer, in that biological sex is experienced as alien.
In some relatively rare cases, AGIO appears in concomitance with other conditions,
which might alter normal development. These could be chromosomal, like the
Turner Syndrome and the Klinefelter Syndrome. Other conditions are hermaphro-
ditism, anomalous genitalia, congenital adrenal hyperplasya, androgen insensitivity
254 S. Giordano

syndrome and alpha-reductase deficiency. In these cases, the sexuality of the indi-
vidual might be ambiguous, for example, if the genitalia are ambiguous, or if
enzymes prevent complete virilisation in biological male, or if chromosomal
anomalies are present. Ghosh and Walker have provided a synthetic and clear
account of these medical conditions and their relationship to AGIO (Ghosh and
Walker 2006). As they explain, AGIO should not be confused with these other con-
ditions, although sometimes it might be triggered by them, as some of these condi-
tions might contribute to create profound uncertainty over the sense of the self and
over gender identification. Typically, however, AGIO sufferers have a clear pheno-
typical appearance that reflects their biological sex and an incongruent gender
identity. AGIO is thus classified as a psychiatric illness. Recent research suggests,
however, that the causes of AGIO might be hormonal and neurological, and not just
psychological (GIRES et al. 2006).

Social Dimension

AGIO also has a social dimension, in two ways: first, AGIO is, to an important
extent, shaped by social categories and stereotypes about gender identity. AGIO
becomes particularly stressful within a certain sociocultural context. We struggle
to contemplate gender ambiguity or differences as one of the many, normal paths
open to individuals, and the psychological distress experienced by the sufferer and
the family is partly due to the difficulty of accepting the reality of a third way
(Connolly 2003). Second, children and adolescents are exposed to bullying, abuse
and denigration, as well as to open physical violence (Di Ceglie 2000, p. 458).
When a person is discriminated against, or subject to abuse and violence, his/her
story is no longer private, but assumes public connotations that deserve public
attention.
The threefold distress to which children and adolescents with AGIO are exposed
makes life unbearable to many of them: Young people with AGIO are at high risk
of suicide (Di Ceglie 1998, p. 194; Di Ceglie et al. 2002).

Therapies: Three Stages

Therapy for AGIO includes three stages (Royal College of Psychiatrists 1998, p. 5):
1. Wholly reversible interventions
2. Partially reversible interventions
3. Partially irreversible interventions2

2
I owe this original classification to Bernard Reed.
Ethics of Management of Gender Atypical Organisation in Children 255

Wholly Reversible Interventions

The first stage of treatment is temporary suspension of pubertal development. This

treatment is offered in cases where the gender dysphoria is diagnosed as being
profound and highly likely to persist. The endogenous production of oestrogen in
girls and testosterone in boys is temporarily suppressed. Gonadotropin-releasing
hormone analogues (GnRHa) are the best available drugs. These act on the pituitary
gland and block the pituitary hormone secretion.3 These drugs are sometimes called
hypothalamic blockers, or simply blockers. These could be given to children
after the onset of puberty, but before the substantial development of secondary sex
characteristics. This is around what is known as Tanner Stage two (http://en.wikipedia.
org/wiki/Tanner_stage).4 Puberty suppression releases the stress of the child and
allows the child and the clinician to assess whether the dysphoria is likely to persist.
If puberty is suppressed successfully, the child can have a real life experience. This
involves adopting the role of the other gender, in order to experience the congruence
with presumed innate gender identity. In the centres that offer such endocrinological
treatment, the child also receives psychological support. After a period on blockers,
the child/adolescent might decide to go on with therapy, and, eventually, to begin
cross-sex hormones (see next section). Alternatively, she/he might wish to revert to
the phenotypical sex, and interrupt therapy. By resuming endogenous sex hormone
production, the pubertal development would restart normally. For this reason, blockers
are regarded as a reversible intervention (see Sections Suspension of Puberty:
Benefits and Suspension of Puberty: Risks).
Both the British Society of Paediatric Endocrinology and Diabetes (BSPED),
and the Royal College of Psychiatrists (Royal College of Psychiatrists 1998) regard
blockers as a therapeutic tool. Blockers, however, can also be regarded as a diag-
nostic tool, as one of their primary functions is to enhance understanding of the real
nature of the patients discomfort (Cohen-Kettenis T Peggy 1998).
The time at which suppression or inhibition of endogenous sex hormones should
begin is controversial. The Harry Benjamin International Gender Dysphoria
Associations Standards of Care for Gender Identity Disorders states that the ado-
lescent (note: not the child) can receive the hormone-blocking medication, provided
that he or she has commenced puberty and he/she has had a persistent desire to
change sex throughout the childhood. Box 1 cites these guidelines.
The Royal College of Psychiatrists recommends that adolescents have experi-
ence of themselves in the post-pubertal state of their biological sex. However, it
contemplates the possibility of earlier interventions (Royal College of Psychiatrists
1998, p. 5).
BSPED, instead, assumed that puberty should be complete before any treatment
could start.

3
I am grateful to Professor Mike Besser for this specification.
4
The precise development can be measured by assessing testicular and breast development and
levels of sex hormones (Delemarre-van de Waal and Cohen-Kettenis, 2006).
256 S. Giordano

Box 1: The Harry Benjamin Standards of Care (The Harry Benjamin

International Gender Dysphoria Associations Standards of Care for Gender
Identity Disorders 2001, p. 10)

Adolescents may be eligible for puberty-delaying hormones as soon as puber-

tal changes have begun. In order for the adolescent and his or her parents to
make an informed decision about pubertal delay, it is recommended that the
adolescent experience the onset of puberty in his or her biologic sex. [] In
order to provide puberty-delaying hormones to an adolescent, the following
criteria must be met:
(1) Through childhood the adolescent has demonstrated an intense pattern of
cross-sex and cross-gender identity and aversion to expected gender role
behaviors.
(2) Sex and gender discomfort has significantly increased with the onset of
puberty.
(3) The family consents and participates in the therapy.

Box 2: BSPED (BSPED, p. 2)

An adolescent should be left to experience his/her natural hormone environ-

ment uninterrupted until:
(A) Development of secondary sexual characteristics is complete.
(B) Final height has been achieved.
(C) Peak bone mass has been accrued (ideally).

BSPED withdrew its approval from its own guidelines in October 2006 after ques-
tions were raised about their clinical appropriateness (puberty cannot be suspended
if it has already completed its course) and credibility (no date of publi-cation and
authorship was claimed). However, it is important to understand the experience of
children who have been treated according to the BSPED guidelines, in order to
understand the ethics of treating minors with AGIO. The passage in Box 3 is written
by an adolescent whose care has been organised under the BSPED guidelines.
This is not an isolated experience. Bran Fenner and Rickke Mananzala (FIERCE)
in collaboration with Z. Arkles and Dean Spade (Sylvia Rivera Law Project)
describe the state in which children are left, when they are refused blockers at the
beginning of puberty:
For these youth, being turned away for hormone treatment at clinics has a number of
effects. First, it further alienates them from medical providers, about whom they may
already feel distrust or fear. Because of this increased distrust, many may not return for
Ethics of Management of Gender Atypical Organisation in Children 257

Box 3: Sixteen and a half-year-old (MF) not been treated until pubertal
development was complete.

I [] began my puberty at the age of ten, so I have lived with this profound
physical wrongness for over six and a half years. The last two and a half years
have been horrendous for me, with my body becoming so disgustingly adult
male that I cannot bear it. [] My body will never, ever be as I would like it
to be and now, unfortunately, it is really a case of damage limitation. [] at
the moment, I am living in a limbo land my name is [] and I dress in
female clothes, but I have facial and body hair, which makes me feel horrible,
I am the wrong shape for the clothes that I wear and I have genitalia which is
completely alien and upsetting and which protrudes through my clothes. []
If I could have started on blockers at Tanner Stage Two (this, for me, was at
the age of about twelve) [] I would have been able to avoid the worst physical
effects of male puberty; as it is, I am going to have to spend years, and a lot
of money, trying to get rid of the many physical male attributes that I could
have avoided. [] I still have many years of being covered, from head to toe,
with thick, black hair to look forward to.

primary care, HIV testing, STD treatment and other essential care. [] Besides creating a
disincentive for other medical care and alienating youth from medical services, these age-
based denials also create a necessity for youth who feel that hormone therapy is essential
to their survival to seek this care out elsewhere. For many, this care is the only way to
express their gender fully so that they can seek employment, attend school, and deal with
every day interactions in their new gender. Without hormones, many have a difficult time
being perceived by others correctly, opening them up to consistent harassment and vio-
lence. For many young people [] taking hormones feels like a life or death need, and they
will do whatever is necessary to get this treatment. Many, when rejected at a clinic based
on age, buy their hormones from friends or on the street, injecting without medical supervi-
sion at dosages that may not be appropriate and without monitoring by medical profession-
als. This opens them up to high risk for HIV, hepatitis, and other serious health concerns.
Additionally, many youth have difficulty raising money to buy these hormones illegally
because they do not have parental support for their transition and face severe job discrimi-
nation as young transgender applicants. For many, criminalized behaviour such as prosti-
tution is the only way to raise the money. Doing this work makes them vulnerable to
violence, trauma, HIV, and STD infection, and entanglement in the juvenile justice system
[]. Once a young person enters the juvenile justice system, the stigma of delinquency
usually follows them throughout life and they often cycle into the adult criminal justice
system upon maturity. (Fenner and Mananzala, 2005)

Delemarre-van de Waal and Cohen-Kettenis concur that: the experience of a full bio-
logical puberty may seriously interfere with healthy psychological functioning and
well being (Delemarre-van de Waal and Cohen-Kettenis 2006, online publication at
p. 3). In February 2007, the UK newspaper The Telegraph reported the news of a
12-year-old boy, treated for AGIO in Germany. This appears to be one of the youngest
children officially treated for AGIO. Experts claimed on that occasion that treatment
258 S. Giordano

was administered in light of the trauma that can affect children with AGIO when their
body begins to take the shape of the unwanted gender (Telegraph, 122007).
In order to understand whether there is any reason to defer treatment, thus leaving
children and adolescents to grow in their biological phenotype, it is important to
understand the clinical benefits and risks of various therapies.

Suspension of Puberty: Benefits

1. Suspension of puberty immediately reduces the patients suffering (Cohen-

Kettenis and Pfafflin, 2003, p. 171).
2. Blockers improve the precision of the diagnosis. Adolescents are given more time
to explore their self and their gender, without the distress of the changing body.
3. Blockers can also help identifying children who are false positives.
Delemarre-van de Waal and Cohen-Kettenis argue that early administration of
blockers might increase the incidence of false positives. However, later dis-
cussion in their paper suggests that appropriate diagnosis decreases the chance
of treating false positives. Making a balanced decision on SR [sex reassign-
ment] is far more difficult for adolescents, who are denied medical treatment
(gnRHa included), because much of their energy will be absorbed by obtaining
treatment rather than exploring in an open way whether SR actually is the
treatment of choice for their gender problem. By starting with GnRHa their
motivation for such exploration enhances and no irreversible changes have
taken place if, as a result of the psychotherapeutic interventions, they would
decide that SR is not what they need (Delemarre-van de Waal and Cohen-
Kettenis 2006, online at p. 12).
4. Suspension of puberty reduces the invasiveness of future surgery. In Female-to-
Male (FM), it would avoid breast removal; in Male-to-Female (MF) it
would avoid painful and expensive treatment for facial and body hair; moreover,
the voice will not deepen, and nose jaw and crico-cartilage (Adams apple) will
be less developed. This will avoid later thyroid chondroplasty to improve
appearance and cricothyroid approximation to raise the pitch of the voice5
(Cohen-Kettenis and Pfafflin, 2003, p. 171).
5. Better psycho-social adaptation is associated with early physical treatment
(Cohen-Kettenis and Pfafflin, 2003, p. 171).
However, there are risks to be considered in suspending puberty.

Suspension of Puberty: Risks

A major concern is the impact of GnRHa on development. Administration of

GnRHa slows the pubertal growth spurt. This can represent an advantage for M-to-F,

5
I owe this clarification to Terry Reed.
Ethics of Management of Gender Atypical Organisation in Children 259

as it makes it more likely for them to achieve an ultimate height within the normal
female range. However, the obvious question is whether reduction of the rate of
growth has any side effects on bone formation and metabolism. GnRHa inhibits the
production of endogenous sex hormones and thereby impacts on the formation of
bone mass. Later administration of cross-sex hormones can increase bone mass, but
long-term effects on bone mass development and sitting height are unclear. Peak
bone mass can only be measured when patients are about 25-years old, and such a
long-term follow-up has not yet been performed.
Another concern is the effect of GnRHa on the brain. Males and females show
different brain development, especially in amount of grey matter. The effects of
suppression of puberty on the brain are not known (Delemarre-van de Waal and
Cohen-Kettenis 2006, online at p. 13).
Currently, the only centre that monitors the consequences of blockers over an
extended period of time is the Department of Medical Psychology and Pediatrics in
Amsterdam. The Amsterdam team sees around 70 children every year. According
to their estimates, two third of the adolescents (age 1218) who apply for treatment
are diagnosed as having profound and persistent gender identity disorder and will
then be treated. Only 2025% of children (under 12) who are seen at their centre
suffer persisting dysphoria and, following the Departments procedures of assess-
ment, will be treated (information kindly offered by Cohen-Kettenis, T. Peggy, per-
sonal communication 2007). According to the Royal College of Psychiatrists it is
not clear how many children with gender dysphoria will become transsexual adults
(Royal College of Psychiatrists 1998, p. 5; Di Ceglie 2000, p. 462). According to
another study, nearly all those who experience dysphoria in adolescence will
become transsexual adults (Wren 2000).
These estimates should only be taken as a rough indication. Given that patients
who are refused therapy or who decide to suspend therapy are not followed up, it
is impossible to establish whether they will eventually transition to the other gender
as adults or elsewhere. This might be inevitable but to some extent impinges upon
the reliability of statistics of incidence and prevalence of AGIO in the general popu-
lation, and on the way AGIO develops when it is manifested early in life.
The selection process in Amsterdam includes rigid psychological and endocrino-
logical assessments. Until they undergo surgery (after the age of 18) patients are
seen by the endocrinologist and by the psychologist at least every 3 months, although
the psychologist is available for more frequent sessions. The endocrinological and
psychological follow-up is meant to observe and prevent any abnormal development
and adverse consequences of treatment. All parties should be convinced that treat-
ment is in the best interests of the child (Cohen-Kettenis, personal communication
2007; for more information see Delemarre-van de Waal and Cohen-Kettenis 2006)
Follow-up includes assessment of bone density and body compositionyearly;
skeletal ageyearly, endocrine and metabolic parametersevery 6 monthsand
anthropometry (overall height, weight, sitting height, skin folds, waist and hips)
every 3 months. Laboratory measurements include levels of gonadotrophins and
sex hormones, metabolic parameters such as fasting glucose, insulin, cholesterol,
high-density lipoprotein and low-density lipoprotein levels. In addition, safety
260 S. Giordano

parameters, such as renal and liver functions, are estimated (Delemarre-van de

Waal and Cohen-Kettenis 2006, online at pp. 89).
These studies show that later administration of cross-sex hormones makes it
possible to manipulate overall height and achieve quasi-normal height. (Cohen-
Kettenis and Delemarre-van de Waal 2005).
Additional concerns regarding blockers are their effects on the reproductive capa-
bility. Specialists in Belgium have explored these effects (De Sutter 2005). De Sutter
explains that the use of blockers in early puberty might prevent the storage of sperm
(for MF children) and of ova (for FM children) for future reproductive
purposes. However, the suppression of spermatogenesis in males is temporary and
can be restored by interrupting treatment. A boy, whose puberty has been sup-
pressed before spermatogenesis has occurred, could decide to stop treatment long
enough for spermatogenesis to start, once he is a bit older, if he wishes to collect
and store sperm for reproductive purposes (this of course would mean that he would
have to accept the masculinising effects of endogenous testosterone on his body).
He can then continue with treatment for transition to female gender.
Collection of ova in females is less problematic. The treatment has little impact
on the already formed ova. They may be collected and stored at the time of
oophorectomy (De Sutter 2005).
An additional problem for trans-girls is that the genital tissue available for the
later creation of a vagina will be less than would otherwise have been available, but
this problem could be resolved with appropriate surgical intervention.
The results of current studies are encouraging. Suspension of puberty at an
early stage seems to have no significant and non-controllable adverse side
effects. Peter Lee and Christopher Houk (USA) write: We believe suppression
of pubertal sexual characteristics is warranted when there is evidence of pubertal
onset. Suppression of pubertal sex steroid production and thus secondary sexual
characteristics can be effectively and safely accomplished using gonadotropin-
releasing hormone analogues (GnRHa)an intervention that is both temporary
and reversible (Lee and Houk 2006).
Preliminary evidence leads to the conclusion that there are sound clinical
grounds for commencing treatment soon after the onset of puberty. Questions can
be raised, however, as to the ethical legitimacy of suspension of puberty, and these
will be discussed in the last seven sections. I shall now outline the partially
reversible interventions, and their risks and benefits.

Partially Reversible Interventions

Partially reversible interventions refer to masculinising and feminising hormones.

Cross-sex hormones have the following benefits:
1. They initiate the development of the secondary sex characteristics that accord
with the innate gender identity.
Ethics of Management of Gender Atypical Organisation in Children 261

2. They make it easier for the person to have a real-life experience by beginning to
alter the physical appearance to accord with the new gender role.
3. They allow the person to explore what it feels like to be the other gender, thus mak-
ing it possible to make a better-informed choice about irreversible interventions.
There is no agreed protocol as to the dosage, or as to the type of hormones that
should be offered, as the case history below shows (Box 4):
The difference in national protocols has the inevitable and unfortunate con-
sequence of promoting medical tourism. US experts report6 that patients,
who are not treated adequately in some European countries, travel to the USA
to receive privately paid treatment. Those who cannot afford this, as we have
seen above, are forced to suffer or attempt other, often illegal, and, above all,
unsafe routes.

Risks of Cross-Sex Hormones

Risks are mainly cardiovascular. Cross-sex hormones seem to increase the likeli-
hood of occurrence of serious/fatal cardiovascular diseases in patients already at
risk (smokers, obese patients, patients with heart diseases, hypertension, clotting
abnormalities or some endocrine abnormalities). Most of these risks concern
mainly adults and generally do not apply to children and adolescents.
In trans-women, oestrogens and progestins may also cause infertility, weight
gain, emotional lability, liver disease, gallstone formation somnolence and diabetes
mellitus. In trans-men, testosterone may cause infertility, acne, emotional lability,
increased sexual desire and hepatic dysfunction and even malignant liver tumours
(The Harry Benjamin International Gender Dysphoria Associations Standards of
Care for Gender Identity Disorders 2001, p. 15).

BOX 4: Case history

A sixteen and a half (MF) at Tanner stage 5 (and therefore already fully
grown in the biological male phenotype) is treated in the UK with analogue
GnRHa, followed later by 5 mcg of ethinylestradiol per day. This would be
increased every 6 months. In Gent, in Amsterdam and in the USA ethinylestra-
diol is not utilised in cases like hers. Beta oestradiol (in the USA this is called
Estrace) is used, because it is a natural oestrogen and because it has shown
lower association with thrombosis. The dosage of beta oestradiol that she would
be recommended is comparable to 3050 mcg of ethinylestradiolmuch higher
than the dosage that the patient would receive in the UK.

6
Private communication.
262 S. Giordano

One final important risk associated with cross-sex hormones is that the treatment
is only partially reversible. If a patient decides to interrupt treatment, effects such
as voice change and beard growth cannot be changed, although possibly amelio-
rated, and breast development in males through administration of oestrogens and
progestins can be only removed with surgery.
International guidelines on treatment for AGIO recommend that masculinising
and feminising hormones should not be administered before the age of 16 (The
Harry Benjamin International Gender Dysphoria Associations Standards of
Care for Gender Identity Disorders 2001, p. 10). These guidelines, moreover,
insist on the support of the family. Later sections will examine the ethico-legal
issues around setting age limits for access to treatment and around the involve-
ment of the family.

Irreversible Interventions

These refer particularly to surgery.

Surgery represents the final stage of treatment, although hormone intervention
is an additional lifelong treatment. The benefits of surgery are self-evident. The
patient has finally obtained a body in line with the innate gender identity. According
to a study, body satisfaction significantly increases in the vast majority of cases
(Cohen-Kettenis and Delemarre 2005).
Risks of surgery include normal risks associated with all surgery. Additional
risks concern body dissatisfaction (Cohen-Kettenis et al. 2003): in some rare
cases the person wishes to revert to the original gender. Reversing surgery
involves expensive and invasive procedures, which in some cases can only be
partially successful (GIRES 2005). Even for those who successfully transition
to the other gender, satisfaction might be incomplete. The reasons for partial
satisfaction can be diverse. First, to be one or the other is not everyones reality.
For some, ambiguity is the reality, and such will be the case after transition.
Incomplete satisfaction might also be a function of the life history of those who
transition. It is possible that many of those who have had to struggle a great deal
to have cross-sex surgery feel great uncertainty over the self due to their life
experiences, often populated by unemployment, emigration, prostitution, abuse,
criminalisation and violence or, at least, struggle with the medical system to
receive adequate care.
International and national guidelines agree that surgery should not be carried
out before the age of 18 (The Harry Benjamin International Gender Dysphoria
Associations Standards of Care for Gender Identity Disorders 2001, p. 11;
Royal College of Psychiatrists 1998, p. 6), although, as mentioned earlier, in
September 2007 the Courts of Argentina granted permission for cross-sex sur-
gery to a 17-year-old patient, Natalia. Section Ageism will discuss the ethical
issues around the determination of age limits for access to treatment.
Ethics of Management of Gender Atypical Organisation in Children 263

Ethical Issues: Playing God

The treatment for transsexualism in minors is surrounded by many ethical and pos-
sibly legal issues. One of the main issues that can be raised is about the ethics of
playing God or playing with nature. There might be an intuitive distrust or revulsion
over medical interventions that interfere with spontaneous development. Medicine
itself is, however, a discipline aimed at changing the course of events and nature for
the better. Other authors have rejected the objection against medical interference in
the course of nature as unsustainable and I shall not repeat debates already widely
covered in ethics and bioethics (Ryan 1995; Harris and Giordano 2003). If there is
reason to believe that minors will benefit from suspension of puberty and cross-sex
hormones, it is ethical to provide these treatments. Our emotions and intuitions
should leave room for reasoned judgement upon the minors welfare.
Other ethical issues concern childrens competence to make informed decisions
about their condition.

Competence and AGIO

AGIO is currently classified as a mental illness. Mental illness can be believed to

jeopardise the sufferers decision-making capacity; in particular, his/her capacity to
consent to treatment for the illness itself (MHA 1983, s. 63). There are grounds for
challenging the classification of AGIO as a mental illness (Giordano 2008a).
Arlene has also pointed out the potential damage of considering individual gender
expressions as mental illnesses, and the ethical dilemmas of needing a psychiatric
diagnosis in order to obtain medical treatment (Arlene 2006). However, even if
AGIO was appropriately conceptualised as a mental illness, this would not ipso
facto entail patient incompetence. Although there are difficulties inherent in the
determination of competence (Mason and McCall Smith 2006, p. 334), the pres-
ence of a mental disorder does not necessarily affect capacity to consent to medical
and psychiatric treatment, including treatment for the mental illness (Department of
Health 2000, para 15.915.24; Mason and McCall Smith 2006, pp. 263264;
Giordano 1999, 2001). The fact that AGIO is currently classified as a psychiatric
illness should not remove presumption of competence in patients and applicants.

Minors and Competence

Another worry might be whether minors can give genuine and legally valid consent
to treatment for AGIO. Health care professionals, in particular, might be concerned
about legal liability for treating minors with AGIO. The first stage of therapy, in
264 S. Giordano

order to be effective, should begin early in puberty, and it can be asked whether
minors under the age of 16 can make competent decisions on treatment that has
significant effects on their development.
In Anglo-Saxon jurisdictions a person is deemed competent if she/he under-
stands in broad terms the nature of his/her condition, purposes of proposed
treatment and alternatives, and can balance risks and benefits of proposed
treatment and alternatives. It is not excluded that children can display compe-
tence. Competence does not depend on the age of the child, but on subjective
features of the child in respect to the particular treatment proposed (Jones
2006, p. 129).
Some jurisdictions protect the right of the child to consent to medical treatment.
The UK Family Law Reform Act 1969, for example, at Section 8, states that a
minor who has attained the age of 16 years can give valid consent to any surgical,
medical or dental treatment. Where a minor has by virtue of Section 8 given effec-
tive consent to treatment, it shall not be necessary to obtain consent from his/her
parent/s or guardian (Brazier 1992, pp. 361371). Surgical, medical or dental
treatment includes any procedure undertaken for the purposes of diagnosis, and
this section also applies to any procedure (including the administration of an anaes-
thetic) that is ancillary to that treatment. There is no apparent reason for excluding
treatment for AGIO from under the umbrella of treatments covered by Section 8 of
The Family Law Reform Act 1969.
In the Anglo-Saxon legal panorama, children under 16 can also be competent
to make medical decisions. Gillick v West Norfolk and Wisbech Area Health
Authority ([1985] 3 A11 ER 402 HL) established that a child under 16 is compe-
tent and can give an effective consent to medical treatment providing that she/he
had reached:
sufficient understanding and intelligence to be capable of making up his own mind in
the matter requiring decision. ([1985] 3 All ER 402 at 409 e-h per Lord Fraser and at 422 g-j
per Lord Scarman; See also R v D (1984) 2 A11 ER 449)

Although the implications of Gillick in terms of childrens right to autonomy are

discussed (Freeman 2006), Gillick competence is regarded as the landmark of
adolescent autonomy in health care (Eekelaar 1986, p. 1).
In order to satisfy a request for treatment, not only the request has to be compe-
tently made, but also treatment has to be in the minors best interests. Whether
treatment is in the minors best interests is a matter on which health care providers
are called to deliberate, on the basis the evaluation of each individual child.
However, should the health care provider find that treatment is in the childs best
interests, there would be no reason to deny it on the ground that the applicant is
incompetent by reason of age or by reason of AGIO. There is in fact no reason for
assuming that children with AGIO cannot be competent, in the way described by
law, to make a judgement upon medical treatment for their conditions (for more
detailed discussion of competence and the courts in gender reassignment cases see
Jones 2006; See also Whittle and Downs 2000).
Ethics of Management of Gender Atypical Organisation in Children 265

There is, however, a more general issue. It can be asked whether informed con-
sent for treatment of AGIO can be given at all.

Can Informed Consent Be Given at All?

In order to be valid, consent needs to be informed. Information about the risks and
benefits of treatment is material to the decision. However, Sections Suspension of
Puberty: Risks, Risks of Cross-Sex Hormones and Irreversible Interventions
have shown that the risks of treatment for AGIO (including risk of incomplete satis-
faction) have not been fully established. It may be believed that this makes it impos-
sible to give valid informed consent to gender transition. Children and adolescents
might be believed to have greater difficulty in foreseeing how they will feel in the
future, due to the scarcer capacity of their long-term judgement and scarcer knowl-
edge of the self, and therefore more at risk of giving invalid consent.
The idea that partial unpredictability invalidates consent is mistaken. If it were
not possible to consent to interventions whose outcome is uncertain, it would
follow that medical research involving human beings is always unethical, and this
is clearly not the case. In order to give valid consent, the applicant must receive as
complete as possible information about treatment, and has to be informed about the
unknown risks of each stage of therapy. The person will ponder the unknown risks
of treatment with its potential benefits, and will set them against the all-known
psychological and physical effects of non-treatment.
It could be objected that even if the person is competent to take unknown risks,
and even if consent is genuine and legally valid, it is still unethical to expose people,
especially minors, to unknown side effects that could affect their future life.
Although this concern is understandable, the belief that treatment is unethical if
there is a degree of unpredictability is mistaken. Indeed the complete outcome of
many medical treatments is unknown before they commence. If the potential risks
were so high and of such a type that no reasonable person would take them, then
indeed a question could be raised as to whether it is ethical to offer such a treat-
ment, even if the applicants were fully competent. However, preliminary evidence
suggests that no severe or uncontrollable side effects are involved in treatment for
AGIO. Evidence shows that, instead, not being treated is devastating for most chil-
dren and adolescents with profound and persistent AGIO, many of whom try to take
their life if they do not obtain appropriate medical care, and therefore the certain
and real side effects of not receiving treatment might, for many, outweigh any
unknown potential risk of treatment. If it can reasonably be expected that therapy
improves the applicants quality of life or can save his or her life, it is not unethical
to satisfy the request for treatmentit might indeed be unethical to deny it.
This has wider implications. This implies that, in judging whether or not to treat,
health care professionals should evaluate what is likely to happen to the applicant
if he or she does not receive treatment, and not only what is likely to happen if he
266 S. Giordano

or she does receive treatment. In other words, health care professionals should take
into consideration the consequences of their omissions, as well as those of their
actions. This might seem to go beyond professional responsibilities: clinicians
might feel that they should assess the clinical benefits and risks of therapies and that
they are not responsible for what happens to people outside their clinics. Although
the extent to which all of us, including health care professionals, are responsible for
omissions is open to debate, it is a mistake to believe that omitting to treat is a
morally neutral option. There are both ethical and legal grounds for considering
carefully what would happen to the applicant if he or she was not treated, or treated
with hormones and in doses that he or she finds unhelpful.

Acts and Omissions

Doctors are not obliged to provide medical treatment upon request, if treatment goes
against their clinical judgement or their moral values. However, the entitlement to
omit treatment, like any other entitlement, is not absolute. For example, a doctor
who refuses to perform an abortion on the basis of conscientious objection could be
held negligent, if his omission exposes the woman to serious and imminent risks.
Gillick also implies that doctors should evaluate the consequences of their omis-
sions ([1985] 3 All ER 402 at 409 e-h per Lord Fraser).
Doctors are required to look at what is likely to happen to applicants if they fail to
administer requested treatment. I am not suggesting that a doctor should be held
accountable for murder if he refuses to treat an applicant, and she commits suicide as
a result: holding ourselves equally responsible for our omissions bears probably a too
stringent moral responsibility (Husak 1980). However, certainly inaction is not neces-
sarily a morally safe place to be in. When we know that, if we fail to do something,
the consequences for our omissions are serious and potentially fatal for others, we have
some moral responsibility for those consequences. In fact, on Halls account, the deci-
sion not to treat could be regarded as an action, not as an omissionand this would
further explain in what sense doctors are responsible for not treating (Hall 1989). In
AGIO, omitting to treat at the right age, or treating with doses of hormones that the
patient finds unhelpful, may cause great harm to the child (see Section Wholly
Reversible Interventions). This harm can be prevented by blocking pubertal develop-
ment and administering appropriate doses of cross-sex hormones at a later stage.
So far, we have seen that there is no reason to believe that treatment of children
and adolescents with AGIO is undue interference with nature (or with Gods
willan argument that should be left to the faith of each individual); there is no
reason to assume that children with AGIO are incompetent to make decisions about
their conditions, or that valid consent cannot be gathered; finally, I have argued that
early treatment is not unethicalindeed, it might be unethical not to satisfy a
request, when the child is competent and the risks of not treating appear to out-
weigh potential risks involved in therapy. There are further ethico-legal issues relating
to the involvement of the family and determination of age of access to treatment,
which will be examined in the next and final sections.
Ethics of Management of Gender Atypical Organisation in Children 267

The Involvement of the Family: Ethico-Legal Grounds

Anglo-Saxon jurisdictions accept that a competent 16-year-old personand in

some case, a competent child below that agecan commence treatment without
parental consent. In Section Ethical Issues: Minors and Competence, we have
seen that in the UK, the Family Reform Act 1969 establishes that where a minor
has given effective consent to treatment, it shall not be necessary to obtain con-
sent from his/her parent/s or guardian.
International guidelines on treatment for AGIO, however, state or imply that the
family/guardians consent is conditional to the initiation of therapy (The Harry
Benjamin International Gender Dysphoria Associations Standards of Care for
Gender Identity Disorders 2001, pp. 10, 16), and experts agree that adolescents
need the support of their parents in this complex phase of their lives (Delemarre-van
de Waal and Cohen-Kettenis 2006, online at p. 6).
The principle of consistency (Giordano 2008) requires that similar principles
apply to similar circumstances. If different principles apply, there must be relevant
differences that justify difference in treatment. For minors with AGIO, participation
of the family is of crucial importance. Unlike other medical treatments (like, for
example, the provision of contraceptive advice and treatment in Gillick), transition to
the other gender involves the family in a profound way: gender reassignment deter-
mines a modification of the whole family dynamics, and it is essential that the family
supports and participates into the various stages of the transition. This might
explain why guidelines and experts insist upon obtaining consent of the family/
guardian. Many applicants are indeed accompanied and supported by their parents.
Due to the importance of family involvement in order to achieve good outcome, it
might in reality be difficult for a child to persuade a health care provider that it is
in his/her best interests to receive treatment for AGIO where the parents/guardians
consent is withheld.
However, a veto a priori against treatment without parental consent is difficult
to justify. Unless it can be shown that parental consent is always essential to
successful adaptation to gender reassignment, health care professionals should be
open to the possibilityalbeit remoteof treating children without parental
consent. It cannot be assumed that parents always serve or even understand their
childrens best interests, and the decision to treat should ultimately be made in
the best interests of the child. In the unfortunate and possibly rare cases in which
parental support is not available, clinicians should assess whether not receiving
treatment is ultimately better for the competent applicant than being treated without
parental support.

Ageism

International guidelines set out strict age-related criteria for access to treat-
ment (see Sections Irreversible Interventions). The determination of a par-
ticular age of access to gender reassignment is ageist. Ageism is unjust
268 S. Giordano

discrimination by reason of age. Decisions regarding whether or not an appli-

cant should receive treatment should not be based on age, but on the appli-
cants competence and capacity to benefit from treatment. Competence and
capacity to benefit from treatment often are a function of age, but this is not
always the case. Indeed, in AGIO capacity to benefit from treatment is
inversely proportional to age, in that it decreases as puberty advances, and
competence, which generally matures with age, sometimes is manifested very
early in life.
The World Health Organisation (WHO) and the United Nations (UN) have for-
mally established that ageism, including ageism in health care provision, is unethi-
cal (Brasilia Declaration on Ageing, WHO, 1-July 1996, Available at http://www.
oneworld.org/helpage/info/brasilia.html; UN International Year of Older Persons
1999, Available at http://www.un.org/esa/socdev/iyop/).
Age-based discrimination is a violation of one of the most fundamental
human rights, the right to equality meant as non-discrimination. According to
the European Charter of Human Rights, age, together with sex, race, colour,
ethnic or social origin, genetic features, language, religion or belief, political or
any other opinion, membership of a national minority, property, birth, disability
and sexual orientation (Article 21, Non-discrimination), is an arbitrary feature
that does not justify difference in treatment (Besson 2005; Available at http://
www.europarl.eu.int/charter/default_en.htm; See also the Convention for the
Protection of Human Rights and Fundamental Freedoms as amended by Protocol
n. 11, 4 November 1950, Article14, Prohibition of discrimination, Available at
www.echr.coe.int/Convention/webConvenENG.pdf; the Convention for the
rights of the child (2 September 1990), Preamble, Available at http://www.
unhchr.ch/html/menu3/b/k2crc.htm; the European Social Charter (Revised; 3
May 1996), Part IV, Article E., Available at http://conventions.coe.int/Treaty/
EN/Treaties/Html/163.htm).
Ageism generally refers to the treatment of the older patient, and the declara-
tions by the WHO and the UN are normally meant to protect the equal right of
the older person to access medical treatment. However, there is no reason why
one should think that only older patients can be discriminated against by reason
of their age. Younger people can be discriminated against on similar grounds.
Refusing to treat someone because he is too young is an unjust discrimination
based on age. Setting up age limits for access to treatment, in one direction or
the other, is a form of ageism. Health care professionals need to provide valid
reasons to refuse medical treatment: they need to show that the treatment is not
in the best interests of the applicant, or that the applicant is incompetent to
make such a decision at this stage of his/her life and the risks of the treatment
outweigh its expected benefits. Appeal to age alone is ethically unsound and
incongruent with ethical principles stated in virtually all conventions and dec-
larations of human rights and fundamental freedoms.
Health care professionals could argue that it is irresponsible to treat children,
when the outcome of treatment is uncertain. However, if it is irresponsible and/or
unethical to provide treatment whose risks and benefits are uncertain, then this is
Ethics of Management of Gender Atypical Organisation in Children 269

so regardless of the age of the applicant. Treating an adult would be as unethical as

treating a child.
This does not mean that treatment of AGIO must be offered, that doctors have a
moral and legal obligation to treat children who request it. It means that the rationale
for withholding treatment must be made out on other grounds, and not on the basis
of the age of the applicant.

Conclusions

AGIO is a serious medical condition: minors with atypical gender development

sometimes begin to suffer as early as at the age of 4 or 5 and the distress increases
as they grow older. Many of those who cannot receive treatment are at high risk of
suicide. AGIO also represents a great challenge for society. The distress associated
with AGIO is partly determined by rigid social categories and stereotypes relating
to gender identity. It is expected that gender identity will conform to the phenotype
and also that a person be either a male or a female. However, for many people it is
not possible to identify themselves with one gender, and they experience both
genders in their person. AGIO thus induces us to rethink gender identity in a more
comprehensive way, inclusive of phenomena that go beyond the classic gender
divide male-female. AGIO is also a public problem because sufferers are often
exposed to discrimination, abuse and violence, and each act of discrimination,
abuse and violence is a public issue. Thinking about AGIO means thinking about
ways of ensuring all citizens, whatever their gender identity, a secure and peaceful
place in society.
Endocrinology now offers the possibility to suspend puberty and administer
cross-sex hormones in adolescence. This raises ethico-legal issues that have not
been addressed in depth in bioethics literature. This chapter has analysed these
issues. In particular, the question of whether it is unethical (or even illegal) to offer
treatment for AGIO to young adolescents has been examined. Some might believe
that it cannot be ethical to interfere with nature, or that it is unethical to provide
children with treatment whose long-term risks are not fully established. I have
argued that there are no ethical or legal grounds for deferring treatment until
puberty is complete and the applicant is a young adult, because, at that stage, the
damage caused by natural development might be difficult to undo. Indeed, it might
be unethical not to treat as requested, if treatment is likely to prevent great harm
and to save peoples lives.

Acknowledgements I wish to acknowledge Amel Alghrani, Bernard and Terry Reed and John
Harris for their invaluable comments on this work. Moreover, thanks to Domenico Di Ceglie,
Russell Viner, Caroline Brian and Polly Carmichael for engaging into debate with me. Special
gratitude goes to Peggy T. Cohen-Kettenis, Waler Meyer, Petra De Sutter, Mike Besser,
Norman Spack, Peter Lee and Peter Clayton for offering clarification on endocrinological
matters
270 S. Giordano

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Clean Water

Michael Boylan

Abstract This chapter argues that there is a basic human right for clean water and
sanitation. The present state of the world is not even close to providing this human
right. Various considerations of the origins of the current problem are examined in
the context of public health. Then some modest suggestions for beginning the process
of positive change are recommended.

Keywords Water, sanitation, public health, human rights

There is nothing simpler and common or more complex and rare than water. H2O
is a rather simple molecule composed of two common elements. It is not very rare.
Water covers more than 70% of the earth. It makes up to 60% of an adult and 70%
or more of a child. We are largely composed of water. It is an essential ingredient
of who we are and is necessary for our continued life. Though we can live up to a
month without food, most will succumb in five to seven days if deprived of water.
And yet, finding the water that we need is very complex. The supply of potable
clean (so-called blue) water is diminishing. At the same time, the population of the
world is increasing. The WHO (2000) estimates that each person in northern climates
needs 2 to 3 liters of water a day. This increases to 6 to 10 liters in hot equatorial
climates. This creates a complex problem as one of the essential components of
survival becomes scarcer. Lack of clean water puts up to 3.5 billion people annually
at risk for disease (Ahmed 2002).1 Every eight seconds a child dies from drinking
unclean water (Childrens Water Fund 2004). With increasing population, pollu-
tion, global business investment, and geopolitics, the issue of scarcity is critical
(Boberg 2006; Global Water Futures 2005).
This chapter will introduce the reader to the problem of water first as a human
right, and second within the context of public health. Turning to solutions, the third
goal is to suggest a classification of the arena of action and finally to what might
be done within that arena so that some progress might be made that will satisfy
public health concerns within the context of human rights.

1
It should be noted that here and elsewhere the availability of clean water is also linked to the issue
of sanitation.

M. Boylan (ed.) International Public Health Policy and Ethics, 273

Springer Science + Business Media B.V. 2008
274 M. Boylan

Water and Human Rights

It is the position of this chapter that public health policy (whether it be national or
international) should be based upon moral principles rather than mere perceived
expediency (Boylan 2004b). This accepted, what is the status of the moral right to
water? Most of us would admit that water is very importantgiven that it is a bio-
logical necessity for life on a very regular basis. But how should we understand
this? In order to obtain clarity on the issue, we must return to the foundation of all
ethical rights and duties. Now, of course, these are justified in various ways accord-
ing to the normative theory that is put forth by the proponent.2 This author puts
forth a rights-based theory that is justified by the natural human inclination toward
purposive action (Boylan 2004a, chapters 12). Those goods most necessary for
purposive action are those goods to which all potential agents have the strongest
claim (i.e., they are most embedded regarding the foundations of the possibility of
action). The claims are derived via biological, philosophical, psychological, and
anthropological analyses of Homo sapiens, as such. It is not a claim of Jamal or
Juanita as individuals, but is a species-level attribution.
I have tried to sort out these sorts of claims hierarchically as follows:

The Table of Embeddedness3

Basic Goods

Level One: Most deeply embedded4 (that which is absolutely necessary for human
action): Food & water/minimum sanitation, clothing, shelter, protection from
unwarranted bodily harm (including health care)
Level Two: Deeply embedded (that which is necessary for effective basic action
within any given society)
Literacy in the language of the country
Basic mathematical skills
Other fundamental skills necessary to be an effective agent in that country, e.g.,
in the United States some computer literacy is necessary
Some familiarity with the culture and history of the country in which one lives
The assurance that those you interact with are not lying to promote their own interests
The assurance that those you interact with will recognize your human dignity
(as per above) and not exploit you as a means only
Basic human rights such as those listed in the US Bill of Rights and the United
Nations Universal Declaration of Human Rights

2
I discuss some of these fundamental justifications in Boylan (2000).
3
Boylan (2004a, chapter 3).
4
Embedded means proximity to the fundamental goods that allow the possibility of purposive action.
Clean Water 275

Secondary Goods

Level One: Life enhancing, medium to high-medium embeddedness

Basic societal respect
Equal opportunity to compete for the prudential goods of society
Ability to pursue a life plan according to the Personal Worldview Imperative
Ability to participate equally as an agent in the Shared Community Worldview
Imperative
Level Two: Useful, medium to low-medium embeddedness
Ability to utilize ones real and portable property in the manner he or she chooses
Ability to gain from and exploit the consequences of ones labor regardless of
starting point
Ability to pursue goods that are generally owned by most citizens, e.g., in the United
States today a telephone, television, and automobile would fit into this class
Level Three: Luxurious, low embeddedness
Ability to pursue goods that are pleasant even though they are far removed from
action and from the expectations of most citizens within a given country, e.g., in
the United States today a European vacation would fit into this class
Ability to exert ones will so that he or she might extract a disproportionate share
of societys resources for his or her own use
If readers would accept the Table of Embeddedness (or something like it) as the
grounds for species rights claims, then all individuals within the species would
also possess these claims on the basis of logical subsumption. If rights and duties
are correlative, then all others have a duty to provide the claimant his or her rights
claims (subject only to the caveat of ought implies can). In Boylan (2004a)
I concentrate upon duties within a society, but there is no reason to stop there.5
Since water is named as a first-level basic good, and since this is the strongest right
claim (because it is most highly embedded to the possibility of human action), then
the claim right to water is as strong as any other claim right, and the duty to provide
all with potable water is also the highest.
Various other rights claims that get in the way of providing water to all are
weaker on the table of embeddedness. For example, political liberties (often sought
via war and embargos) are a level-two basic good. Visions of social castes such as
aristocratic or oligarchic orderings are level-one secondary goods. Economic devel-
opment falls either at level-two or level-three secondary goods (depending upon net
profitability and proximity to essential action). All these pretenders (and others) are
less embedded than the claim for clean water. Thus, in a conflict, the right to clean
water wins every time.

5
I am presently working on a manuscript that intends to do just this from a regional and a global
perspective.
276 M. Boylan

The argument becomes even stronger when one realizes that water when adulter-
ated can also turn into a source of unwarranted bodily harm. Thus, in two respects
the right to potable water is very strong, indeed. In order to appreciate this in greater
detail, let us turn to the basic areas where water becomes a crucial agent in main-
taining public health.6

Water and Public Health

There are four generally accepted categories of water as a contributing agent to human
disease (Whiteford and Whiteford 2005, 910; Gleick 2004, 79). These are:
1. Water-borne diseases. These diseases occur directly as an individual drinks con-
taminated water. The principal cause of this contamination is human waste.
Untreated waste gives rise to protozoan, bacterial, and viral diseases. These most
commonly attack the human intestines. Specific diseases that are water-borne
include cholera, typhoid, hepatitis, ameobiasis, giardiasis, Taenia solium taeniasis,
ascariasis, hookworm, trichuriasis, and strongyloidiasis. These often attack
groups of people causing local epidemics that are often deadly.
2. Water-washed diseases. These diseases occur when there is not enough water for
proper hygiene or cooking sanitation. People cannot rid themselves of contami-
nants that they might come in contact with and as a result become ill including
trachoma, typhus, and diarrheal diseases.
3. Water-based diseases. These diseases come from hosts that live in water during
part or all of their life cycles. When people bathe, swim, or wash their clothing,
the contaminated water may come into contact with their skin. Diseases such as
schistosomiasis, dracunculiasis, and lung flukes (caused by carrier snails) affect
as many as 200 million people in 70 countries (WHO 2000). Elimination of such
black water would solve this source of disease.
4. Water-related insect vectors. These diseases include those spread by insectssuch
as mosquitoesthat breed in water. These insects infect humans with malaria,
onchocerciasis (river blindness), West Nile fevers, yellow fever, and dengue fever.
One should also add to this list the sanitation infrastructure. In most of the world,
this infrastructure is lacking or incomplete (Reilly and Babbitt 2005; WHO 2000).
With almost 60% of the worlds population at risk for death because of one or more
of these four categories (and their causal connections with poor sanitation), we are
not very far along the road of reaching the United Nations Millennium Development
Goal 7, target 10 to halve by 2015 the proportion of people without sustainable
access to safe drinking water (UNDP 2003).

6
Boylan (2004a, part two), makes the case that because the justification is at the species level,
individual rights claims naturally can be attributed to all subsets within the species: countries,
regions, ethnic groups, etc.
Clean Water 277

Ever since the classic case of Dr. John Snow in the mid-nineteenth century in
London who discovered that a common source (the Broad Street pump) was the
cause of a cholera outbreak, public health officials have been keen on using the
powerful tool of water control for short-term disease control and sanitation/pollution
efforts for long-term solutions (Hempel 2007; Johnson 2006).
In Dr. Snows London, the solution was rather straightforward. There was one
country involved and a limited number of polluting sources. In the case of modern
water contamination, it can be more complicated (Stevens 2006; Brkey 2006; Barah
1996). There are many players and interests at stake. This makes crafting a solution
more complicated. In order to make suggestions on what might be done, it is necessary
to examine the various stakeholders and power brokers to set the stage for our drama.

A Description of the Action Arena

There are various actors in our action arena. The ones that this section will examine
are: nature, humankinds basic activities, international organizations and treaties,
global corporations, and intra-national dynamics.

Nature

Genuine water availability is a function of the hydrological cycle. The cycle works
this way: the suns heat evaporates water into the atmosphere. The heat of the sun,
the dryness of the prevailing air, and the wind control the speed of this process. The
heated liquid becomes gas. This gas rises in the atmosphere, becomes colder, and
as a result condenses into precipitation. The water returns to terrestrial land striking
the soil, streams and lakes, and man-made coverings. The water also returns to
marine (ocean) locales. Marine water is returned by evaporation while terrestrial
water is also returned by flora in the form of transpiration.
The total amount of water on earth is fixed. It is continually changing from solid
to liquid to gas. It is a self-renewing cycle. A sense of where water is located can
be set out as follows.
Figure 1 illustrates how most water on the planet is marine salt water (not proxi-
mately useful for domestic activities of life). For human needs, the most important
of these water reservoirs is surface terrestrial water (lakes), rivers, and underground
terrestrial water. These are the primary, proximate sources of potable water. The
large geographic regions that support these rivers, lakes, and underground terres-
trial water are called water basins (Boberg 2005). For example, there is a single
water basin that supports Lake Superior that extends across states of Minnesota and
Wisconsin and into Ontario, Canada. This is important. The geography of the land
creates the conditions that make rainwater and melted snow move in particular
directions. This geography does not recognize artificial man-made boundaries such
278 M. Boylan

Terrestrial atmosphere: 4.5

Marine atmosphere: 1.1
Ice and snow: 43,500
Biomass: 2.0
Surface terrestrial water: 350
Rivers: 35.0
Underground terrestrial water: 15,300
Marine: 1,400,000
Terrestrial precipitation: 107.0
Terrestrial evaporation and transpiration: 71.0
Marine precipitation: 398.0
Marine evaporation: 434.0
Volumes in 1015 kg (103 km3)/fluxes in 1015 kg year1 (103 km3
year1)

Fig. 1 Where water is on earth (NRC 2005)

as nations and intra-national divisions. Because of their size, water basin manage-
ment can be rather difficult (Fischhendler and Feitelson 2005).
Smaller divisions within water basins are called watersheds. Watersheds are
topographical units that are more recognizable to local control. Because of their
more limited scope there has been more success in creating and executing water
management programs within watersheds.
The strategy for water management of watersheds is to focus upon the particular
ecosystem that supports it. Since an ecosystem is naturally self-sustaining and
interactive, it provides a good model for adaptation and management. By beginning
with the natural sustainable dynamic, we have a pattern or goal to try to re-create
or approximate. Water basins are more difficult because they are affected by many
different ecosystems and may cut across more than one biome. This means that
many different strategies must be undertaken (according to the circumstances) and
that the interaction between these may result in counterproductive outcomes.
It is important to emphasize that we should not be overly anthropocentric about
water management. It is not only humans that need water. There are three other
natural classes that depend upon water to maintain their identity. The first of these
is the land itself. The structural integrity of hills, topsoil, and even mountains over
time can be altered by too much or too little water. If one considers the problem
from a land ethics point of view, then water management is important to maintain
the land as it is (Leopold 1949). Many in the United States have not considered the
needs of the land itself. Strip mining and poor agricultural practices have often had
the effect of altering the character of the landand the character of the land is a
crucial element in the creation of ecosystems and biomes.
Sometimes the land can be a source of pollution. This often occurs due to
extreme weather conditions in which large areas of land mix with water and block
out sunlight, and possibly affect the oxygen content of water. However, this is a
sporadic rather than a regular occurrence.
Second is the flora. Plants need water, minerals, and sunlight to survive.
Minerals are a function of the lands character. Water availability is determined by
Clean Water 279

the water basin and watershed dynamics. Sunlight is sensitive to the atmospheric
medium that separates plants from sunlight entering the earths exosphere. Without
adequate water, plants will die. When plants die they affect the land because they
cease to fix minerals into the soil as well as to maintain topsoil. Again, the entire
ecosystem or biome can significantly alter.
Third is the fauna. Animals need clean water to stay alive and complete their life
cycle. Animals provide nourishment to plants through their excretions and the
decomposition of their bodies. They also participate to help plants to pollinate and
promote vigorous growth by their eating habits.
Both flora and fauna can contribute to water contamination. In the first case dead
trees (for example) can become habitats for bacteria that are harmful to other ecosystem
members. In the second case, animal defecation and animal carcasses both provide
more virulent host opportunities for parasites and bacteria to thrive. These events can
work to the detriment of other animals that drink from the stream or pond.
It is most often the case that the question of water is viewed from the anthropo-
centric viewpoint, but it is important to see the biocentric position, as well.

Humankind

Of course humans (like other animals) require clean water to stay alive and com-
plete their life cycles. Humans drink water and use it to wash themselves and to
clean food preparation items and apparel (domestic usages). In addition, because
humans are toolmaking creatures and bent on habitat alteration, humans require
water for many of their life activities. In fact, unlike other animals, humans use
water most to support these activities. Worldwide humans use water for the follow-
ing classes of action: agriculture70%; industry20%; and domestic (daily life
of drinking, cooking, bathing, washing dishes, etc.)10%. This works out differ-
ently according to the world region involved.
What Fig. 2 tells us is that most of the water that humans use is not directly con-
cerned with the activities of day-to-day living (domestic uses). Other animals only
consume water for domestic purposes and those purposes are rather limited to
drinking and sometimes to bathing. Because 90% of fresh water worldwide is
involved in agriculture (most often for the purpose of irrigation) and industrial uses,

Agricultural (%) Domestic (%) Industry (%)

Europe 40 15 45
N. America 50 10 40
Australia/Oceania 60 28 12
S. America 62 25 13
Africa 80 15 5
Asia 70 10 20

Fig. 2 How water is used around the world (Boberg 2005)

280 M. Boylan

this may provide an area of hope for the future if better and more efficient practices
are developed. At present, both agriculture and industry are great sources of pollu-
tion. In agriculture, fertilizers mix with the water. In most cases this means mixing
human and animal fecal matter into water that will runoff into either ground water
(affecting the watershed) or into local streams and lakes. This mixture of water and
fecal matter creates a breeding ground for parasites, bacteria, and viruses that will
constitute a threat to the health of humans and animals.
When farmers use chemical fertilizers the situation is not much better. Chemical
fertilizers can also affect the ecosystems of rivers, lakes, and marine bodies of water.
These chemicals act as poison and can have the effect of killing large numbers of ani-
mals and affect human health as well by raising the risk of cancer and other diseases.
Industrial wastes are much like the chemical runoff from farms except the by-
products are often more toxic. Some extreme cases, such as Love Canal, can cause
epidemic illness that is often fatal (Reed 2002). Thus the activities of humans con-
stitute a real threat to clean water. This exponentially exceeds the impact of the land
or fauna or flora upon the supply of clean water.

Social/Political Entities

Since humans deleteriously affect water so much, it is useful to identify certain

combinations of humans and their behaviors as key actors in the tragedy of water
contamination. These entities are the social and political constructs of human cul-
ture. Beginning with the largest they include international organizations (such as
the United Nations, and its various operational bodies such as the World Health
Organization (WHO), and the policies and treaties that flow from these). Other
international bodies such as the World Bank can also play pivotal roles in the
financing of public health initiatives that otherwise might not occur.
Secondly, there are international companies whose business ventures within a
country often play a pivotal role in the consequent water pollution. As was noted in
Fig. 2, this ensuing industrial impact can be significant in total water usage. And
baring governmental restraints (corporations are often loath to lower their bottom
line by making investments that have no direct shareholder value (such as voluntary
pollution controls)), there is no realistic change in sight.
Third are the international relations between countries. Since water basins are
often situated over extended geographic regions that overlap to two or more countries,
what happens in one place can have an immediate effect in another. This requires
cooperation. But what if relations between the countries are strained? The result,
sad to say, is often close to the worst possible outcome.
Lastly, is the role of intra-country, local government. Local populations see
water as an asset to their own communities. Their interests may be different from
other localities. This is similar to the problem between countries with the exception
that within one nation it is often easier to find some sort of peaceful, political
resolution of the problem.
Clean Water 281

Thus, the stage is set with the players and their props. Now we must view the
agents of crisis that bring our drama to a climax.

Key Obstacles to Progress

The plot thickens in our drama as we set out some of the underlying conflicts
between our leading characters. This chapter will highlight two classes of conflict:
humankind versus nature and social/political conflicts.

Humankind Versus Nature

The preeminent conflict concerning water between humans and nature, as such,
revolves around agriculture. As we saw in Fig. 2, agriculture uses up to 80% of
a regions water resources. This is more the case in poorer countries than in rich
ones. The poorer countries are the ones with the fewest indigenous resources to
address the problem. Because of the fertilizer problem (mentioned earlier), there
is a continual problem with finding clean water due to water-borne and water-
based factors. But there are also nature issues in the artificial re-creation of
water basins. This is often accomplished by the construction of large dams.
Dams are often created for water management. The principal aims are controlled
irrigation and electricity. But the construction of dams comes at a price. By
interrupting the natural flow of water, ecosystems along with the animals and
plants they support are greatly disrupted.
Those living on the streams that have been diverted will likely suffer from water-
washed factors. The new body of reservoir water may (unless proper sanitation
measures are observed) be subject to water-borne disease and new habitats for
water-related insect vectors. Thus, dams can be the instruments of disease
(Manderson and Huang 2005; Johnson 2005). Dams also exemplify water alloca-
tion changes with winners and losers.
In short, the law of unintended consequences is so prevalent with large water
management projects that it is essential that as much caution as possible be used.
This is often called the principle of precautionary reason.
Humans can live with nature (even sloppily) without much incident so long as the
human population does not get too large. Just like any other animal species, when
one exceeds its sustainability ratio, given a particular ecosystem in a particular time,
then problems occur. In nature, starvation and disease step in to cull the numbers.
In the case of humans, this is an unethical solution when we have the power to stop
it (contra Malthus 1798). This is because each human has a claim right to level-one
basic goods.
However, often we move in this direction indirectly when we create opaque contexts.
In an opaque context two synonymous entities are not linked due to the mode of
282 M. Boylan

expression.7 Thus, if I am correct about this, people do not interrupt the water cycle
because they want to cause disease and death. Rather they do so because they have
some other, immediate prudential aim in mind. The fact that the aim will also cause
disease and death is not seen (because of the context).
This may explain why people act to disrupt the cycle when their own personal
needs are at stake, but it does not justify the act itself. Dams and other alterations
of the natural flow of waters to other regions (such as from the Colorado River to
California for irrigationin the United States; Rowell et al. 2005; Glenn et al.
1996) are examples of altering the hydrological cycle. As per above, when we
interfere with natural systems, we do so at our peril. We may be involved in artifi-
cially raising expectations in the region receiving the water and at the same time
harming the source of that water by removing the mass of liquid from its geographi-
cally situated hydrological-cycle location. Thus, the most important point about the
humannature conflict is the potential long-term damage that interruption and deg-
radation of this cycle can cause.

Social/Political Conflicts

The next area to consider concerns inter-human constructions. First, there is eco-
nomic development. There are at least two dynamics at play here: industry as such
and the effects of globalization. As we saw in the last section, industry uses up to
45% of a regions water. Aside from the problems mentioned earlier about untreated
runoff from industry there is the further problem of the commercialization of water
(Mulreany et al. 2006; Payen 2005). Privatization of water management in various
poorer countries around the world has had the affect of limiting domestic access to
poorer people within the society (Whiteford and Cortez-Lara 2005; Guillet 2005).
This is because the goal of private companies (without public oversight; Boylan
2008) is profit. The social goal of equal access to clean water among all segments
of society is not in step with the private goal of returning shareholder value. The
most common way access is restricted is by price. This creates a shortage of water
among the poor and an increase in water-washed disease. The poor often turn to
untreated water and are then subject to water-borne disease, as well.
Even in the G8 wealthy countries, the commercialization of drinking water
occurs. An example of this is bottled water whose sales have been increasing by
10% per year (Gleick 2004). Bottled water represents a possible move toward mak-
ing this the option of choice for human consumption. But bottled water costs as
much as $1,000 per m3 in California in 2003, while municipal water in the same

7
For example, Tully was a Roman is trochaic while Cicero was a Roman is not trochaic even
though Tully is a synonym of Cicero. Synonyms should render an equal context, unless there
is another variable at hand: here the scansion of the lead word. When the context of expression
makes synonymous relationships unclear, then there is an opaque context (Quine 1960,
142146).
Clean Water 283

locale is $1 per m3. This is an example of a paradigm of transferring attractive

potable water to a high-cost delivery system when the quality of the water is not
significantly better than the municipal water (Gleick 2004). One could imagine a
possible scenario in which bottled water acquires 80%+ market share and local
governments decide to be less diligent in maintaining the quality of municipal
water for drinking (thinking that most people buy their drinking water via bottled
water). With an 80%+ market share this is probably a true assumption. But what
about the other 20%? These would be the people who could not afford to pay the
prices for bottled water. They would then be subject to water-washed and water-
borne diseases. It is not too great of a stretch to imagine a future scenario not too
much different from this. The commercialization of watereven in affluent coun-
tries can pose potential risks.
Further, the overlay of globalization intensifies some of these problems and adds
new ones. For example, the scarcity problem in Equador created a water-borne
cholera outbreak that was focused in poor areas (Whiteford 2005). Also, globaliza-
tion has led to deregulation through treaties designed to nurture economic growth,
e.g., NAFTA and FTAA. But some of the regulations that have been scrapped pro-
tect water and the environment. Sometimes, a water payment system is set in place
in which water pollution levels can be bought and sold in an effort to lower macro
contamination. But often the effect is to transfer water protection away from the
poor and dispossessed to the affluent centers of industrial wealth (Hong 2000).
This chapter has taken the position that water is a level-one basic good of
agency. Thus, there is no justification that it be treated as a level-two or level-three
secondary-good subject to barter and commercialization. The nature of the basic
goods is that they are commonly claimed and cooperatively delivered. Systems of
capitalistic distribution that aim at efficiency at the expense of equity should not be
the default distribution mechanisms of basic goods of agency (Boylan 2004a).
Second, it deals with the dynamics of social discrimination. For purposes of
brevity let us confine ourselves to gender and economic differences. In much of the
developing world (as mentioned above) poor areas are often severely short changed
in being provided potable water and proper sanitation. Since it is often the case that
the preponderance of those most affected in these situations are women and chil-
dren (Ferguson 2005), unequal access to clean water and adequate sanitation ends
up as de facto gender discrimination. This is especially compounded in sub-Saharan
Africa in which there is an epidemic of HIV/AIDS. Poor women are statistically
more at risk in this region and thus their immune systems are compromised. This
puts the female and juvenile population at even greater peril in the face of contami-
nated water. People with compromised immune systems are more likely to contract
serious diseases that they otherwise might have been able to thwart off. Thus, the
availability of clean water further underscores the sorry plight of poor women and
children in developing countries.
The social and political causes continue to haunt subsistence societies with a
markedly higher differential impact upon marginalized peoples. This is hardly an
appropriate response to delivering a good to which all humans have a basic claim
right. The plot has reached its crisis.
284 M. Boylan

A Few Modest Proposals

The clean water debate in developing countries has largely been driven by the
World Bank that has sought to instigate competitive, market-based solutions to
problems that I argue above are really cooperative domains requiring competent
government oversight. The current system is disintegrating quickly. Some restora-
tive action is desperately needed. Here are a few modest proposals that this author
feels will begin the process of recovery.

Conceptual

1. Public Health Principles should be guided by morality (e.g., valid claim rights).
2. There should be a general acceptance that clean water and sanitation are a level-one
basic goods. Since all basic goods constitute claim rights that entail correlative
duties, the entire world must accept its duty to provide all people on the planet
with clean water and sanitation. This is a strong moral ought.
3. There should be a general acceptance that the interests of the poor, women, and
children, etc. are included in #2.
4. There should be a general acceptance that natural environmental systems be
respected. The principle of precautionary reason should always be applied when
tampering with any ecosystem, biome, watershed, or water basin.
5. All interruptions in the natural order should be required to meet the burden of
proof that the intervention will create a sustainable outcome. This thesis should
be subjected to public and scientific scrutiny before proceeding.
6. Economic development should not be mixed up with executing moral duty. If
option A will give more economic development at the expense of the poor and
if option B will give less economic development but recognize the societal duty
to provide clean water and sanitation to all, then B should trump A.8

Concrete

1. International organizations, such as the World Bank, should not try to mix evan-
gelical capitalism in their development grants to subsistent societies.
2. Competition and commercialization of water as a resource should be avoided
until all citizens within a society have access to clean water and sanitation.
3. An international body with stature, such as the United Nations, the WHO, the
IMF, and the World Bank should monitor all new water projects with respect to
the principle of precautionary reason and environmental sustainability (above).

8
In Boylan (2004a, chapter 8) there are some further nuances to this.
Clean Water 285

4. The wealthy nations of the world should devote substantial resources (progres-
sively: according to their ability to pay) toward the capitalization of substantial
sanitation and water purification projects at both the national and local levels in
subsistent societies (monitored as per #3).
5. Wealthy societies should look within their own countries in order to avoid com-
promising the availability of water for domestic use (including the monitoring
of agricultural and industrial pollution).
6. A binding system of arbitration should be established to adjudicate international
disputes concerning pollution and watershed/water-basin management as well as
verifiable alterations in the hydrological cycle within a region.

Conclusion

This chapter has argued that every person on earth has a very strong claim right to
clean water. The sad reality is that a large portion of the world lacks potable water
and proper sanitation. This fact creates a nest of public health problemsmostly
due to the ensuing infectious diseases and parasites via the modes of water-borne
and water-based situations. Lack of water (water-washed) and water-related insect
vectors are also sources of morbidity and mortality. Too often those who are not
subject to these public health challenges have met these states of affairs with a
shrug of the shoulders. This reaction is unacceptable. The solutions that have been
tried over the past 20 years have not really been effective. This is because they have
been aimed at the affluent segments of society. The billions who constitute the poor
are not improved by capitalist-inspired market solutions. Level-one basic goods
require concerned, competent governmental oversight for the sake of society. We
are about to begin the final act of our drama. Let us do everything we can to avoid
our drama becoming a human tragedy.

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Contributors

Margaret Pabst Battin, MFA, Ph.D. is Distinguished Professor of Philosophy and

Adjunct Professor of Internal Medicine in the Division of Medical Ethics and
Humanities at the University of Utah. The author of prize-winning short stories
and recipient of the University of Utahs Distinguished Research Award, she has
authored, edited, or coedited fifteen books, among them a study of philosophical
issues in suicide; a scholarly edition of John Donnes Biathanatos; a collection on
age-rationing of medical care; Puzzles About Art, a volume of case-puzzles in aes-
thetics; a text on professional ethics; Ethics in the Sanctuary, a study of ethical
issues in organized religion; two collections of essays on end-of-life issues, entitled
The Least Worst Death and Ending Life, and is senior author of the multiauthored
volume Drugs and Justice: Seeking a Consistent, Coherent, Comprehensive View.
She has also been engaged in research on active euthanasia and assisted suicide in
the Netherlands. In 2000, she was a corecipient, with Leslie Francis, of the
Rosenblatt Prize, the University of Utahs most prestigious award, and was named
Distinguished Honors Professor in 20022003. She is a Fellow of the Hastings
Center, and was recently named one of the Mothers of Bioethics.
Deryck Beyleveld, Ph.D. is Professor of Law and Bioethics at Durham University.
His numerous publications span Criminology, Philosophy of the Social Sciences,
Moral and Legal Philosophy, and many areas of law. He has a special interest in the
regulation and ethics of Biotechnology and Medical Science, and founded the
Sheffield Institute of Biotechnological Law and Ethics (SIBLE) in 1994, which
he directed until his appointment at Durham University in 2006. He is an exponent
of the moral theory of the American philosopher, Alan Gewirth, and much of his
work involves application of this theory in the critical analysis of law. He is the
author of A Bibliography on General Deterrence Research (Saxon House 1980) and
The Dialectical Necessity of Morality (Chicago University Press 1991); coauthor
(with Roger Brownsword) of Law as a Moral Judgment (Sweet and Maxell 1986
and Sheffield Academic Press 1994), Mice Morality and Patents (Common Law
Institute of Intellectual Property 1993), Human Dignity in Bioethics and Biolaw
(OUP 2001), and Consent in the Law (Hart, in press).
Michael Boylan, Ph.D. is Professor of Philosophy and Chair at Marymount
University in Arlington, Virginia. He is currently a visiting fellow at the Center for

289
290 Contributors

American Progress, a think tank in Washington, DC. His most recent books: The
Good, The True, The Beautiful (2008), and The Extinction of Desire (2007) are bold
experiments in presenting first a comprehensive vision on traditional problems in
philosophy, and second offering a work in narrative philosophy. A Just Society
(2004) is his manifesto on ethics and social/political philosophy (and the most
complete depiction of his normative worldview theory and is the subject of a forth-
coming book of exploratory essays by scholars from seven countries). This edited
volume is his 21st book (12 single or coauthored, 9 edited).
David Cummiskey, Ph.D. is Professor of Philosophy at Bates College. Cummiskey
is also a medical ethics consultant at Mid Coast Hospital, Brunswick Maine, and at
Central Maine Medical Center, Lewiston Maine. His primary research interests are
contemporary Kantian ethics, consequentialism, and international and cross-cultural
approaches to issues in medical ethics. He is the author of Kantian Consequentialism
(Oxford University Press, 1996).
Norman Daniels, Ph.D. is Mary B Saltonstall Professor and Professor of Ethics
and Population Health at Harvard School of Public Health. His most recent coau-
thored books include Setting Limits Fairly: Learning to Share Resources for
Health, 2nd edition, (Oxford 2008). From Chance to Choice: Genetics and Justice
(2000); and Is Inequality Bad for Our Health? (2000). He is leading research on
how to adapt the benchmarks of fairness for use in less-developed countries,
continues work on limit-setting in public and private insurance schemes here and
abroad, and has recently completed Just Health: Meeting Health Needs Fairly,
(Cambridge, 2008).
Leslie P. Francis, Ph.D., J.D. is Professor and Chair, Department of Philosophy,
and Alfred C. Emery Professor of Law at the University of Utah. She works on
areas at the intersection of law, legal and ethical theory, bioethics, and disability.
She is particularly interested in issues of distributive justice, partial compliance
theory, and discrimination. She is coeditor of six volumes, including the Blackwell
Guide to Medical Ethics and Americans With Disabilities, coauthor of Land Wars:
Property, Community and Land Use in an Interconnected World, and author of
Sexual Harassment: Ethical Issues in Academic Life. In 2000, she was a corecipient,
with Margaret Battin, of the Rosenblatt Prize, the University of Utahs most pres-
tigious award. She is currently a member of the American Law Institute, the U. S.
National Committee on Vital and Health Statistics, and the ethics committee of the
American Society for Reproductive Medicine.
Simona Giordano, Ph.D. is Senior Lecturer of Bioethics at the Centre for Social
Ethics and Policy and Institute of Medicine Law and Bioethics, and is member of
the Institute of Ethics Science and Innovation (University of Manchester, UK). She
studied philosophy at the University La Sapienza of Rome and completed Ph.D. on
Psychiatric Ethics in 2000 at the University of Manchester. She is the author of
Understanding Eating Disorders, Oxford University Press. She has written exten-
sively on anorexia nervosa, transgenderism, and on many other bioethical issues.
Contributors 291

Simona Giordano was born in 1973 in Viterbo (Italy); she lives in Manchester since
1997 and has a 2-year-old son.
Web-page: http://www.law.man.ac.uk/staff/simona_giordano/default.htm
John-Stewart Gordon, Ph.D. received his degree in Philosophy at Gttingen
University, Germany 2005. He is research scholar and Lecturer at the Institute for
Medical Ethics and History of Medicine at the Ruhr-University Bochum in Germany.
Currently, he is member of the board of Bioethics and area-editor of the new-
founded field bioethics of The Internet Encyclopedia of Philosophy. He published
two books and several articles in ethics, political philosophy, and ancient philosophy
and taught philosophy and bioethics at Tbingen University, Ruhr-University Bochum,
and Duisburg-Essen University. His current work on principlism in biomedical ethics
is funded by the German Research Foundation (20062008).
John Harris, Ph.D. is Lord David Alliance Professor of Bioethics Research at the
University of Manchester and the Director of the Institute of Science, Ethics and
Innovation in the School of Law. The Institute focuses upon the ethical questions
raised by science and technology in the 21st century. He has been a member of the
United Kingdom Human Genetics Commission since its founding in 1999, and was
the first philosopher to have been elected as a fellow of the United Kingdom
Academy of Medical Sciences (FmedSci) in 2001. He is also joint editor-in-chief
of The Journal of Medical Ethics.
Kristen Hessler, Ph.D. is Assistant Professor at the State University of New York
at Albany. She received her Ph.D. from the University of Arizona. Her research
focuses on political philosophy (especially issues in global justice, human rights,
and international law) and bioethics (with a focus on environmental and agricultural
issues). She has published articles on human rights law, international justice, and
ethical issues concerning biotechnology in agriculture. She teaches courses in eth-
ics, applied ethics, political philosophy, and feminist philosophy.
Christian F. Illies, Ph.D. was KIVI-NIRIA Professor for Philosophy of Culture
and Technology at the Technical University Delft until 2008. Beginning in 2008, he
became the Chair in Philosophy at the Otto-Friedrich University Bamberg/Germany.
Illies studied in Heidelberg, Konstanz, cole Normale Suprieure Fontenay/St.
Cloud, and at Oxford (as a Rhodes Scholar). His research focuses on ethics and
metaethics, philosophy of biology, philosophical anthropology, and philosophy of
culture and technology. He is the author of Darwin (Freiburg 1999, coauthored with
V. Hsle), The Grounds of Ethical Judgement (Oxford 2003), and Philosophische
Anthropologie im biologischen Zeitalter (Frankfurt 2006).
Jay A. Jacobson, MD is Professor of Internal Medicine, Chief, Division of Medical
Ethics and Humanities, and member, Division of Infectious Diseases, University of
Utah School of Medicine and Intermountain Medical Center. He is a Fellow of the
American College of Physicians and member of its Ethics and Human Rights
Committee; Fellow, Infectious Diseases Society of America; and Director, Utah
Partnership to Improve End of Life Care. Dr. Jacobson trained in epidemiology and
292 Contributors

infectious diseases at the Centers for Disease Control and the University of Utah,
and was drawn to medical ethics by the emergence of the AIDS epidemic. A fellow-
ship in Clinical Ethics at the University of Chicago led him to establish the Division
of Medical Ethics and Humanities at the University of Utah in 1989. His infectious
diseases consultative practice has been a constant reminder of ethical problems
raised by acute, communicable diseases that call for a more comprehensive and
compassionate response than that afforded by a traditional emphasis on patient
autonomy. Nationally acknowledged for his commitment to emphasizing ethics in
medical education and training, Dr. Jacobson has worked continuously with his
multidisciplinary colleagues to explore the illuminating intersection of ethics and
infectious diseases. In 2004, he was given the American Medical Association Isaac
Hayes and John Bell Award for Leadership in Medical Ethics and Professionalism.

Paul M. Kelly, MBBS, DA, FAFPHM, DTM&H, Ph.D. is Associate Professor

and a Specialist Public Health Physician, researcher and educator with a specific
interest in tuberculosis (TB). He is Director of the Masters of Applied Epidemiology
Programme at the National Centre for Epidemiology and Population Health,
Australian National University, Canberra, Australia. Dr. Kelly graduated with a
medical degree in 1984. His research career commenced when he was Medical
Superintendent of a 200-bed hospital in Malawi, Africa from 19911995, where he
completed fieldwork for his Ph.D. on TB-HIV interactions. In the past 10 years, he
has led or participated in TB control and research activity in Indonesia, Timor
Leste, Australia and New Zealand. His research interests remain in international
health, with a particular emphasis on TB control, community-based health care
strategies and clinical aspects of TB. His main research strengths are in epidemiology,
infectious diseases and health services research. Dr. Kelly has contributed to WHO
guidelines on TB and HIV and a recent WHO report on TB drug resistance. He is
the author of over 50 publications, including 30 peer-reviewed journal articles, two
books and four book chapters, the majority related to TB and/or international
health. He is married with two children.
Shaun Pattinson, Ph.D. is a Reader in Law at Durham University. He was previously
Senior Lecturer in Law at the University of Sheffield. He has a law degree from the
University of Hull, and a Masters degree (in Biotechnological Law and Ethics) and
Ph.D. from the University of Sheffield. He has been a visiting research fellow at the
University of Helsinki, Finland. His research interests are primarily in the area of
medical law and ethics. His principal publications are Influencing Traits Before
Birth (2002) and Medical Law and Ethics (2006). He edits Medical Law
International with Professor Viv Harpwood (Cardiff Law School).
Laura Purdy, Ph.D. received a Ph.D. from Stanford University. She is Professor
of Philosophy, and Ruth and Albert Koch Professor of Humanities at Wells College,
where she has been based since 1979. She is currently the Alan J. McCullough
Visiting Distinguished Professor of Political Philosophy at Hamilton College. Her
areas of specialization are applied ethics, bioethics, reproductive ethics, family
issues, and feminism. She is author of In Their Best Interest? The Case against
Contributors 293

Equal Rights for Children, and Reproducing Persons: Issues in Feminist Bioethics;
and coeditor of several additional collections, as well as many articles.
Muireann Quigley, B.Sc., MB, Ch.B., M.A. is a Lecturer in Bioethics at the Centre
for Social Ethics and Policy and the Institute of Science, Ethics and Innovation in
the School of Law at the University of Manchester. She has previously worked as
a Research Fellow in the Centre, and was a medical doctor in a former life. Her
research interests are wide and varied but include the ethics of reproduction and the
reproductive technologies, organ transplantation, genetics, rightsspecifically
property rights in the human body and its parts, and issues of justice and responsi-
bility in healthcare.
Michael Selgelid, Ph.D. earned a BS in Biomedical Engineering from Duke
University and a Ph.D. in Philosophy from the University of California, San Diego.
He is a Senior Research Fellow in the Centre for Applied Philosophy and Public
Ethics (CAPPE) and the Menzies Centre for Health Policy at the Australian
National University, where he is also a founding and Executive Board member of a
new National Centre for Biosecurity. He was previously the Sesquicentenary Lecturer
in Bioethics in the Centre for Values, Ethics and the Law in Medicine (VELIM) and
the Unit for History and Philosophy of Science at the University of Sydney, where
he coordinated the proposal and development of a successful new Postgraduate
Program in Bioethics. He also held previous appointments in the Department of
Philosophy and the Division of Bioethics (School of Clinical Medicine) at the
University of the Witwatersrand in Johannesburg, South Africa. His research focuses
on ethical issues associated with infectious disease and genetics. He recently coau-
thored Ethical and Philosophical Consideration of the Dual-Use Dilemma in the
Biological Sciences (Springer 2008); and he coedited Ethics and Infectious Disease
(Blackwell, 2006). He is a member of the Ethics Advisory Group of the International
Union Against Tuberculosis and Lung Disease.
Adrian Sleigh, MBBS, ETM&H, MPH, MD, FRCP, FRACP is Professor of
Epidemiology at the National Centre for Epidemiology and Population Health,
ANU College of Medicine and Health Sciences, The Australian National University.
He has trained in Australia, UK and North America in medicine, epidemiology,
tropical diseases and public health. For many years he has worked with resource-poor
communities in Australasia and South America on health, development and disease
control, both as a health team member and field researcher. His published research
covers health and social effects of dams, health system performance, parasitic
infections, tuberculosis and viral diseases, including SARS. Recent work in China
on tuberculosis focused on diagnosis and treatment, cost-of-illness, and influence
of internal work migration on risk of infection and access to care.
Charles B. Smith MD is Emeritus Professor of Medicine at the University of Utah
School of Medicine. He is previously served as Chief of the Division of Infectious
Diseases at the University of Utah School of Medicine, and Associate Dean at the
University of Washington School of Medicine and Chief Medical Officer at the Seattle
Veterans Administration Hospital. Dr. Smith has served as President of the Veterans
294 Contributors

Administration Association of Chiefs of Staff. His research has focused on respira-

tory viral and bacterial infections, and in recent years particularly on ethical issues
related to infectious diseases. He is coeditor of Ethics and Infectious Disease.
Henrik Syse (M.A., Boston College; Ph.D., University of Oslo) is a Senior
Research Fellow at the International Peace Research Institute, Oslo (PRIO). From
2005 to 2007 he was Head of Corporate Governance for Norges Bank Investment
Management (NBIM). He currently acts part-time as a consultant and advisor for
NBIM. He has written widely in the fields of moral and political philosophy and is,
inter alia, the co-editor, with Gregory Reichberg and Endre Begby, of The Ethics of
War: Classic and Contemporary Readings (Oxford: Blackwell, 2006) and the
author of Natural Law, Religion, and Rights (South Bend, IN: St. Augustines
Press, 2007). In 2007, he was nominated as a Young Global Leader by the World
Economic Forum in Davos.
Wanda Teays, (Ph.D. Concordia University, Montreal) is a Professor of Philosophy
and Department Chair at Mount St. Marys College in Los Angeles. Her books
include: Second Thoughts: Critical Thinking for a Diverse Society, 4th ed.
(McGraw-Hill, est. date 2009). She coedited (with Laura Purdy) Bioethics, Justice,
and Health Care (Wadsworth, 2001) and (with Stanley G. French and Laura Purdy)
Violence Against Women: Philosophical Perspectives (Cornell University Press,
1998). To accompany her bioethics anthology, she selected film clips on bioethics
in the news for a CNN-produced video. Her most recent articles are Torture and
Public Health, will be published in Michael Boylan, ed. International Public
Health Ethics and Policy (Springer, 2008) and Extinguishing Desire: Not Such a
Simple Plan After All, in John-Stewart Gordon, ed., Morality and Politics:
Reading Boylans A Just Society (Rowman & Littlefield, est. 2009). She also wrote
From Fear to Eternity: Violence and Public Health, in Michael Boylan, ed. Public
Health Policy and Ethics (Kluwer, 2004), The Ethics of Performance Enhancing
Drugs, in Teays/Purdy, eds. Bioethics, Justice & Health Care (Wadsworth, 2001),
among other articles in the area of bioethics, justice, and the law. She is currently
working with John-Stewart Gordon and Alison Renteln on an anthology in the area
of Bioethics and Culture.
Rosemarie Tong, Ph.D. is Distinguished Professor of Health Care Ethics in the
Department of Philosophy and Director of the Center for Ethics and Applied
Philosophy at the University of North Carolina at Charlotte. She has published over
a dozen books and over 100 articles on topics related to feminist thought, reproduc-
tive and genetic technology, biomedical research, feminist bioethics, and global
bioethics. Dr. Tong serves as an ethics consultant for several ethics committees and
institutional review boards and has participated in several statewide task forces,
including a recent one on Ethical Guidelines for an Outbreak of Pandemic Flu. She
is a former Coordinator of the International Network of Feminist Approaches to
Bioethics and an Executive Board member of a variety of associations, including
the Association for Practical and Professional Ethics.
Index

A Doctors, 59, 60, 6366, 75, 78, 8082, 84, 85,

Abortion, 5, 85, 91, 92, 94, 97, 98n11, 92, 94, 98n11, 113, 114, 117, 127, 168,
99104, 266 266, 269
Acts/omissions, 19, 61, 62, 64, 78, 84, 144, Drug resistance, 206, 236, 239, 242
145, 147, 266
Ageism, 23, 249, 262, 267269
Agency, 1, 4, 7, 31, 3639, 4648, 50, E
52, 60, 84, 123125, 153155, 283 Ends, justification of, 7, 99, 144, 146, 147
AIDS, 10, 32, 102, 103, 113, 119, 126, 183, Equality, 93, 110112, 121, 123, 127, 132,
191194, 197, 198, 208, 211, 222, 137, 141, 152, 170, 244, 268
233239, 243, 283 Ethics, 2, 3, 7, 10, 16, 26n9, 27, 3135, 37, 38,
Avian flu, 22, 191, 192, 194, 215217 4042, 83, 92, 95, 96, 101, 104. See
also Bioethics
care, 10, 135, 215
B investing, 175
Bioethics, 32, 97n8, 198, 210, 218, 233235, religious, 110, 116n7
237242, 245, 263, 269.
See also Ethics
F
Family planning, 100, 102
C Flu vaccine, 215
Capabilities, 145, 152, 153 Force feeding, 59, 8184
Care, ethics of, 10, 135, 215 Foreign policy, 91, 93, 123
Communicability, 191
Competence in minors, 249
Consent, 45, 46, 4956, 67, 84, 85, 234, 238, G
242, 249, 263267 Gag rule, 102
Gender identity disorder, 251, 255, 256, 259,
261, 262, 267
D Geneva Conventions, 5, 60, 61, 65n8, 72,
Detainees, 5, 5969, 70n13, n15, n16, 71n18, 77, 125
7385 Global healthcare, 6, 120, 126, 131133,
Developing world, 192, 199, 201, 202, 135137, 139141, 192199, 201,
238, 283 203, 204, 206212, 216, 242, 243
Discounting the future, 2327 Globalization, 120, 242, 282, 283
Distributive justice, healthcare right to, 3, 4n5, Global public good, 6, 131133, 135137,
n6, 122, 243 139141

295
296 Index

Guidelines, international, 262, 267 M

for treating gender identity disorder, 259 Malaria, 6, 115, 116, 191193, 200, 202, 206,
211, 233, 276
Mann, Jonathan, 4, 31, 32, 34, 37
H Medications, essential, 233
Health/ healthcare, right to, 1, 3138, 4042, Minors, competence, 249, 263265, 267
56, 84, 85, 111113, 115, 119, 123, Mutual fund investing, 175
127, 128, 133, 136, 158, 159, 161,
268, 284
access, 68, 18, 85, 91, 127, 131, 132, N
135141, 145, 158161, 163, 165, 166, Non-identifiable, 18, 2023, 53
168, 170172, 210, 235, 236, 243, 262, North Carolina public health, 217
266268 Norway, 6, 8, 109, 112, 120, 193
financing, 158, 161, 162, 166,
168, 280
personnel, 60, 63, 64, 66, 67, 72, 75, 83, O
84, 113, 114, 117, 127, 128, 171, 215, Obligation, 20, 23, 26, 34, 38, 39, 53, 56, 83,
217, 218, 220224 109113, 116, 119, 120, 123128, 133,
reform, 169 137, 151, 154, 208, 215, 218221,
Human rights, 1, 2, 4, 10, 12, 3142, 4850, 223225, 229, 239, 269
51n6, 53, 61, 73, 74n24, 81, 8385 Omissions/ acts, 19, 61, 62, 64, 78, 84, 144,
(315 Instances) 145, 147, 266

I P
Identifiable, 15, 16, 18, 2023, 52, 53, 239. Patient as victim and vector, 9, 195, 198,
See also Non-identifiable 205209, 212
Individual health, 16, 17, 159 PGC. See Principle of generic consistency
Infectious disease, 2, 4, 9, 10, 45, 54, 55, Poverty, 2, 3, 6, 7, 41, 91, 102, 113, 116118,
191212, 215, 233, 234, 236, 237, 241, 131, 134137, 139, 143146, 151,
243, 244, 285 171172, 197, 204, 205, 210, 234,
Influenza pandemic, 10, 215229 238, 243
Insurance, social. See Social insurance Primary health care, 6, 7, 131133,
Interests, 1, 4, 37, 39, 45, 4750, 52, 53, 55, 135141
56, 98, 103, 115, 119, 125127, 153, Principle of generic consistency, 4, 4557
162, 163, 168, 179, 183, 185187, 216, Prisoners, 5, 60, 61, 63, 64, 65n8, 6668,
218, 220, 221, 227, 228, 253, 259, 264, 70n14, 71, 73, 74, 76, 79, 82, 83, 85,
267, 268, 274, 277, 280, 284 125, 209
International property rights, 114116 Privacy, 2, 4, 10, 45, 46, 4951, 53, 54, 56, 93,
International guidelines for treatment of 205, 209, 218, 234, 240, 242
gender identity disorder, 249 Pro-life, 94, 100
Interrogation, 5, 59, 6266, 68, 7072, 7476, Puberty, suspension of, 255, 258260,
7981, 8385 263, 265
Investing, ethical, 175 Public health, international, 3, 6, 132, 133,
mutual and sovereign funds, 175 135, 139, 175
PVV. See Patient as victim and vector

J
Justice. See Distributive justice, healthcare Q
right to Quarantine, 10, 209, 215, 218, 224, 225, 234,
Justification of ends, 144, 147 241, 242
Index 297

R Statistical victims, 20, 22

Rawls, 110, 112, 119n8, 122, 123, 138, 146 Suspension of puberty, 255, 258260,
Religious ethics, 110, 116n7 263, 265
Religious right, 5, 91, 92, 95, 100n17
Research, 4, 38, 45, 46, 49, 5156, 62n3, n4,
99, 101, 115, 126, 143, 146, 191195, T
198, 203, 205207, 209, 233, 237, 238, Torture, 2, 4, 5, 5972, 74n27, 75, 76, 78, 79,
254, 265 8185, 134, 207
Responsibility, 21, 60, 61, 111, 119, 120, 123, Transcendental arguments, 148n9
150, 151, 158, 159, 175n1, 176, 178, Tuberculosis, 10, 191, 192, 194, 197, 200,
215, 219221, 223, 224, 229, 201, 211, 233237
249, 266
Rights, 4, 24, 32, 3541, 46, 47, 5055, 57
health, 1, 4, 3138, 4042, 56, 84, 85, U
111113, 115, 119, 123, 127, 128, 133, Utilitarianism, 10, 26n9, 32
136, 158, 159, 161, 268, 284
human, 1, 2, 4, 10, 12, 3138, 4042, 46,
48, 50, 51n6, 53, 61, 73, 74n24, 81, 83, V
84 (315 Instances) Victim and vector. See Patient as victim
property, 114, 115, 124, 126, 140, 234, 268 and vector
Rule of rescue, 15, 16, 1820

W
S Water, 1, 11, 20, 24, 70, 71, 7577, 78n42, 81,
Sanitation, 1, 2, 11, 131, 139, 192, 194, 201, 171, 183, 192, 194, 197, 201, 202, 204,
202, 204, 205, 236, 273, 274, 276, 277, 205, 211, 223, 273285
281, 283285 Waterboarding, 59, 63, 66, 67, 70
Sen, Amartya, 132, 152154 Well-being, 16, 2426, 3739, 41, 46n2, 50,
Social insurance, 7, 8, 157, 158, 160172 51, 61, 97n8, 104, 127, 131, 135, 138,
Sovereign fund investing, 175, 185 153, 197