Accounting for Culture in Globalized Bioethics

Accounthg for Cuhme in a Globalized B i d -

Patricia Marshall and Barbara Koedg

s we look to the future in a world with porous borders and boundaries transgressed by technolo- A gies, an inevitable question is: Can there be a single,

“global” bioethics? Intimately intertwined with this question is a second one: How might a global bioethics account for profound - and constantly transforming - sources of cultural difference? Can a uniform, global bioethics be relevant cross-culturally? These are not simple questions, rather, a multi-dimensional answer is required. It is important to distinguish between two meanings of bioethics: the academic discipline of bioethics as opposed to bioethics as a set of (increasingly globalized) practices governing clinical care and scientific research. There is growing evidence to support the notion of a shared “global” understanding of bioethics as a field of inquiry focused on the moral dimensions of science and biomedicine. Professional organizations and academic programs supporting a discipline that is becoming more “formalized and “professionalized are well established throughout the industrialized world; bioethics is a growing presence in the developing world as well. The number of academic journals devoted to bioethics is increasing, including those focused on medical ethics in non-western settings such as Developing World Bioetbics, and in recent years, conferences on a wide range of topics in bioethics have been held throughout the world.

Although there appears to be agreement about bioethics as a field of study, there is much less consensus about the relevance and applicability of bioethics as a set of guidelines and practices that can be implemented in diverse cultural settings.’ From this perspective, academic rhetoric about the nature and scope of a developing profession and its particular epistemological foundations is

Jo~mal ofr;aw, Medicine C B b b , 32 (2004): 252-266. 0 2004 by the American Society of Law, Medicine & Ethics.

very different than its actual performance in social context. As anthropologists, we are particularly interested in the latter. How is the gap between theory and practice bridged? Currently, the exportation of a Western approach to bioethics in clinical and research settings worldwide mirrors the globalization of biomedicine itself. However, unlike the acceptability of biomedical techniques across the world - from efficacious low-tech interventions like antibiotics to complex surgical procedures like heart transplantation and intensive care units - the adoption of bioethics’ concepts and practices has been more contentious, in part because the moral meanings of illness, health, and healing systems are culturally and religiously grounded. Thus, bioethics practices such as advance care planning, full disclosure of a terminal diagnosis, or informed consent in clinical research may be in fundamental conflict with local traditions and beliefs. As anthropologists engaged in a pragmatic vision of bioethics, we have to ask: do such practices actually improve the care of the ill, enhance the well being of populations, or protect subjects in biomedical research?

In this paper, we reflect on the tensions produced as various visions of bioethics circulate in a rapidly globaliz- ing world. Commentators concerned with global health equality and human rights have been vocal critics of an American bioethics focused on the “quandary ethics” of affluence. The physician and anthropologist Paul Farme12 contrasts his experiences treating patients in rural Haiti with his work as an attending physician at Harvard. As an infectious disease specialist he uses the same tools in both places; but in Haiti obtaining the drugs that are the tools of his trade is the greatest challenge. Discussions during clinical ethics rounds at a Boston teaching hospital of withholding antibiotics (considered to be futile) stand in stark contrast to the imperative to save lives lost prematurely to treatable infections in Port au Prince: Farmer notes, “I can’t help but

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make connections between the surfeit on one side - too much care - and the paucity on the It seem unlikely that a bioethics developed in American hospitals will prove up to the challenges of rural poverty without significant refmements. We are deeply concerned with the implications of exporting American bioethics practices throughout the world. The problem is not simply one of national wealth or access to resources, although these are critical considerations. Given the diversity of human values, we ask if bioethics can only flourish in the context of a liberal democratic state, one that is - at least theoreti- cally - based upon respect for individual rights and recognition of diverse cultural and religious value^.^

Consider the following scenarios:

In the future, prenatal genetic testing services are likely to increase in availability. Testing may even be marketed “direct to consumers” over the internet. However, the implementation of prenatal genetic testing will be viewed quite differently within ethnically diverse societies and across national boundaries. Currently, the issue of sex selection using “simple” technologies like ultrasound is of concern globally. Easily available prenatal genetic testing will exacerbate these concerns and, in addition, will raise fundamental questions about judging the value and worth of characteristics that make us human. Will bioethics practices - primarily informed consent based on ideals of nondirective genetic counseling - be adequate safeguards to protect human rights, particularly the rights of women, throughout the world?

What if it is necessary for a woman to seek permission from her husband to obtain medical care or participate in a clinical research study? Does it make a difference if you are in Germany, the United States, Morocco, Thailand, or Nigeria? Should this practice be evaluated based on “local” norms or should standards based on a “universal” notion of respect for individual autonomy apply? Does following ethical guidelines based on U.S. legal requirements guarantee respect for persons? Does context matter?

In recent years, the existence of “organ brokers” who operate at the margins of the law have been reported in India, Brazil, and other nations. How do we reconcile the idea of selling human body parts such as kidneys with current proposals suggesting that organ donors or their families be compensated with small sums of money or payment for burial costs? What makes the first practice morally reprehensible to many people, while the latter is more acceptable to others? Can neolibera15 assertions of a right to control one’s bodily integrity

to secure financial gain be applied identically in a Manila slum, an urban ghetto in the US., or in an impoverished post-Soviet state?

Each of these scenarios challenges the possibility of a unified, culturally relevant bioethics. In configuring a global bioethics, how do we resolve fundamental cultural and religious differences about the foundations of medical morality? How do we accommodate human rights while maintaining a posture of respect for cultural difference, particularly when there is evidence of abuse or injustice towards individuals or groups? How do we avoid the promulgation of a West- ernized bioethics that fosters only an illusion of global consensus about the morality of medical practices? In “d” worlds, morally complex challenges abound.

In this paper we offer an updated definition of the concept of culture, arguing that attention to cultural difference matters in a thoughtfid rendering of bioethics. We endorse the notion of a critical, self-reflexive bioethics, suggesting that bioethics needs to change its fundamental orientation if it is going to remain professionally relevant and intell- vibrant throughout the twenty-first century. We join others in noting that bioethics must attend to issues of social justice and public health, while seriously considering the implications of social context for medical morality. We demonstrate how a culturally-informed bioethics generates a more robust account of health care practices, an account that grounds ethid universals, such as respect for persons, in local moral worlds. We maintain that the complexity of lived experience and real world dilemmas is obscured when ethical universals are simplistically applied to particular cases or particular settings. Negotiating moral consensus across cultural boundaries will be difficult. But it is more likely to succeed if we critically engage with the cultural assump tions underlying bioethics itself.

BIOE~CS’ REurclcANT ENGAGEMENT w r r ~ s o c M L & m A M ) CuLTul?ALI)IppERwcE The past is a necessary prologue in looking toward the future. Moral pluralism and cultural difference have not been central topics of concern in the fmt decades of American academic bioethics.6 As Wow has argued, there is an irony in this silence. Bioethics has only concerned itself with issues of cultural pluralism quite recently, even though a critical plank in the fields foundation can be traced to the Nuremberg trials following World War II. The Nazi doctors’ abuse of research subjects was legitimized by a state ideology endorsing persecution and discrimination based on mcial difference. Thus it seems odd that bioethics as a field did not embrace the needs and priorities of cultural and ethnic minorities as central to its mission. This challenge was never engaged; the focus on individual rights supplanted attention to group claims, or attention to how human rights claims

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might be adapted to local cultural context. Possibly linked to this dimgad of “Mmnce” is the

fields failure to engage with questions of global health equity or population health. In the post World War I1 period, bioethics’ focus on the doctodpatient dyad mirrored the concerns of American biomedicine, which dis- reNed population health issues and ignod the growing disparities in health care across the U.S. population related to social inequality8 In an era of boundless hope and belief in the power of biomedicine, belief in the research enterprise and its applicability to individual health was unquestioned.

Much critical ink has been spilled rehearsing the defi- ciencies of an individualistic, de-contextualized, American bioethics focused on a limited number of abstract principles: the Georgetown mantra? Clouser and Gert wrote: ‘Throughout the land, arising from the throng of converts to bioethics awareness, there can be heard a new mantm ... ‘beneficence ... autonomy .... justice ....’ It is this ritual incan- tation in the face of biomedical dilemmas that beckons our inquiry.”’O The work of Renee Fox has revealed the limitations of this model, pointing out its unexamined assumptions.11 (See also De Vries, in this special issue for a review of sociological studies of bioethics.) We review this critique not to dispute the relevance of abstract principles in bioethics - we do not contest their value- rather, our concern as anthropologists is with the everyday practices derived from these principles] practices that often fall short of realizing the normative intent of the prinaples themselves.

The topics engaged by bioethicists reveal the “Americanness” of bioethics. The early focus was invari- ably on quandary ethics in the context of “high tech” biomedicine, with analyses targeted to “high drama” cases like heart transplantation or refusal of blood products by Jehovah’s Witness patients. This orientation calls attention to specific cases, to the individual, to the “localn- not the global - it is case specific, diminishing the potential for broader social critique.

C ~ ~ J R A L A N A L . . ~ D J N G A REmExrvE OF BIOETHIC3

We opened this essay by making a distinction between bioethics as an academic field and bioethics as a set of observable cultural practices that circulate independently of their theoretical foundations. Daniel Callahan sharpens this distinction, adding to our two-part division.I2 His definition of bioethics divides the field into five distinctive categories: 1) clinical bioethics, 2) foundational bioethics, 3) regulatory bioethics, 4) cultural bioethics, and 5 ) health- policy bioethics.” Our critique of “practices” parallels Callahan’s concerns about clinical and regulatory bioethics. Often the bioethics practices utilized in the clinic or as part of a research protocol take on a life of their own, emphasized as procedures only, disconnected from the

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foundational theory on which they were once based. Indeed, since practices have rarely been studied empirically, we often have little evidence of their usefulness. In the case of some innovations, for example the widespread adoption of advance directives to guide end-of-life care, we actually have evidence that bioethics practices have generally failed, and that they are differentially valued by ethnically diverse U.S. p~pulations.’~

Callahan laments the loss of a “cultural approach to bioethics, and here we are in full agreement with his critique of the fields direction. He defines this as an initial, but now less prominent strand within the “bioethics enterprise,” that is “striving to determine the cultural basis and implications of biomedical advances . . . ” l5

In its earliest days, there were two powerful currents in bioethics, not necessarily incompatible but su~ely moving in different directions. One of them turned its attention to individual rights and choice, with which the analytically mined philosophers and lawyers were most comfortable, and the other to the social and cultural meaning of the bio medical developments, which profited from a religious and social-science presence as well as nonanalytic philosophical approaches . . . . The [latter] current, social and cultural in its thrust, saw the main role of bioethics as an exploration of the likely effects of biomedical knowledge and its application on the human condition: the appropriate role of biomedicine in promoting human welfm and sustaining such impomt institutions as the family and community, the way health as an individual and social good is to be understood in the context of other human needs, and the way we understand human nature and human dignity.I6

Such questions were common in the field’s initial decade, but were later supplanted by other concerns. Our view of a “cultural” critique (and a fully global view of bioethics) includes the questions raised by Callahan. An anthropological critique necessarily takes a reflexive stance. As noted by De Vries,” critical cultural or sociological analysis does not simply serve the field by providing descriptive ethics content that can inform theory. Rather, a reflexive, cultudy- informed bioethics examines the field itself, questioning bioethics’ actions in relation to bwdd social institutions. A fdl cultural critique will continually evaluate how bioethics itself is tied into global power structures, perhaps inadvextently serving to maintain the status quo in biomd- cine or in the rapidly changing c i i n i c a l ~ indusy. Who funds the bioethics enterprise? What interests are served by its existence? One might argue that the true purpose of informed coflsent in research - empowering human subjects - has been transformed by socio-politicaleconomic structures into

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a legalistic informed consent document that now functions more to protect the interests of institutions (both academic health science centers and pharmaceutical companies) than of sub-. And bioethicists are employed by hose same htituti0ns.’~

Thus, we argue for “CLllturdl” work in bioethics that is vital and moves well beyond the limited notion of examining the “cross-cultural implications” of bioethics. A cultural approach is critical to understanding some of the most vexing problems in biomedicine, and placing those problems in context. Callahan uses the example of the US. failure to develop a comprehensive and inclusive universal health care system.19 In the face of ever expanding technology- intensive medical care, large percentages of the population are denied access to basic services. What does bioethics say about this fundamental failure? In its first decades, few bioethicists were actively engaged in addressing the moral implications of political-economic shifts in the organization of health care, but now these issues have moved to the forefront of debate.

We predict that a “cultural” approach to bioethics will return the field to this path not taken early on. The discipline of bioethics will move increasingly to answering the concern5 raised by those mounting global human rights arguments.2o Attention to broad cultural concerns will also force an examination of the drastically changed political and economic environment that backgrounds the U.S. health care system. Given the changed dynamics, including market forces and the impact of managed care, there is ample reason to argue for a turn away from what Callahan talks about as the “triumph of autonomy.” Bioethics practices that celebrate only autonomy, with its emphasis on choice, and downplay social and economic constraints on individual agency, are out of touch with health-care realities in the U.S. as well as globally. The changed discourse - doctor becomes provider and patient becomes consumer - reflects fundamental, systemic problems characteristic of market-driven medicine.

Callahan’s discussion of the challenges of integrating social science knowledge - and ethnography in particular - into bioethics, is useful. Responding directly to critiques leveled by Arthur Kleinman and other anthropologists, he joins their criticism of the limits of principlism but also points out its value. Callahan expresses disap- pointment with many of bioehcs’ directions and outcomes. “The reductionist drive of principlism has had some debili- tating effects on the field.”*’ Yet he warns against the dangers of giving up normative ethics analysis within bioethics, and we agree. Callahan wants social science, including a broad-based cultural critique, in bioethics, but is “uneasy” with casting this work as a form of modernday salvation. Social science methods may offer a better way forward, “but only if they are combined with a way of pursuing ethical analysis that knows how to make good use of

social-science knowledge . . . . Ethics must, in the end, be ethics, not social science.” A good ethical theory will help determine which social science data are relevant. Callahan also critiques social scientists who “essentialize” philosophy, since not all philosophy is devoted to establishing “universalist propositions.” Consider, for example, contemporary scholars such as Richard Rorty and classical philosophers such as Aristotle. What do you do afleryou know the full cultural context? Callahan emphasizes that you still must ask the “ought” questions, even when the “is” is fully elaborated. He finds principlism inadequate, but not because it seeks universals. Rather, the current iteration of bioethics has just got the equilibrium wrong in the ancient struggle of balancing individual rights with communal goals and values. We argue that this imbalance can be corrected in the future by focusing on an inter- disciplinary bioethics attentive to context.

Studies of the new genetics, in particular the work of anthropologist Rap Rapp, offer a pointed example of the need to attend to broad issues of social context in evaluat- ing the goals, impact (and benefits) of a new technology.u Specifically, what are the “eugenic” implications of the new genetics? Has bioethics made a difference? In North America, we rely almost exclusively on a rhetoric of individual choice to counter wonies about the eugenic implications of widespread genetic testing. The v e n t is as follows: the “old eugenics, that is state sponsored programs such as steriliza- tion of those judged mentally defective or other “negative” eugenics programs, are unlikely to happen again in the US. or other liberal democracies. Adequate protection comes from the preservation of individual reproductive choice coupled with adherence to norms of “non-directive” genetic counseling. However, Rapp’s detailed ethnographic work focused on women undkrgoing amniocentesis suggests that a na’ive reliance on individual-focused bioethics practices like informed consent may - by themselves, and without amtion to the broader context in which individual decisions are made - be inadequate.23 She sees the possibility of a new regime of eugenics:

... there is a growing consciousness that current eugenic dilemmas will be rooted more thoroughly in the free-market economy of contemporary capitalism, rather than in legislation aimed at controlling reproduction . . . . the “individual choice” model of reproduction as noneugenic requires some interrogation. Because “choice” is market-driven in contemporary North American culture, it appears to be based on expanding possibilities ... we may soon be standing on the “slippery slope” of a “eugenic boutique.” Whose individual choices will these be? More subtly, who will frame the values within which those individuals making reproductive choices come

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of age? ... attributing safety to an individual-choice model foregrounds personal liberty while backgrounding the social matrix of a technoscientifk marketplace to whose requisite individual choices are increasingly enrolled.24

Rapp’s analysis points out how the market and new regimes of biopower may “discipline” individual choice as effectively as formal, coercive government programs. Many of these assumptions are built into the technologies. Why would one accept prenatal genetic diagnosis if the implicit but often unstated outcome - pregnancy termination as the “correct” response to a damaged fetus - were not widely shared and endorsed.25 Rapp’s detailed compari- sons of decision making by women in New York City from various ethnic and class backgrounds also reveal the intri- cate connections between social and cultural context and individual agency. One affluent white woman describes terminating a pregnancy because the child will never “become president,” while an impoverished, recent immi- grant explains that she feels compelled to end a pregnancy because of the potential negative impact a disabled child would have on her existing children. Each is exercising “choice.” But are the choices truly free; are they equally autonomous and valid?

Of course state-sponsored or endorsed eugenics programs are certainly imaginable in certain political contexts, for example in “new democracies” that take a Merent, more restrictive view of individual liberties and human rights. And in other contexts, genetic testing programs may be widely endorsed by communities, in spite of limits on individual choice. Two examples come to mind. The use of pre-conception testing among orthodox Jewish communities in New York and Montreal constrains the marriage choices of young adults. In Cyprus, state-sponsored (and church-endorsed) population-based testing for thalasemia seemingly violates all existing {Western) bioethics norms governing reproductive genetics, but is widely accepted by the population.26 Whether these programs violate or support universal ethical principles is difficult, if not impossible to determine without in-depth study of the local moral context. Another serious c o n c e r n is the application of innovations derived from the new genetics. With the exception of a small number of bioethics scholars who have focused on the global public health applications of the new genetics, little attention has been paid to issues of justice in debates about the ethical, legal and social implications of genomic technologies.

THERE A COMMON M O R ~ T Y ? We acknowledge that our claims about the relevance of cultural context run counter to standard accounts within bioethics. The suggestion that it is impossible to under-

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stand (and thus to critique) a moral system without attention to historical contingencies and social traditions is very problematic for many philosophers and philosophically- trained bioethicists.n From the vantage point of philosophy, the primacy of the moral sphere - and the objectivity of ethical inquiry - may be threatened by social science claims about the relevance of empirical descriptions of cultural variation to the sphere of ethics. The presumed dichotomy offact and value is at the heart of this debate. As philosophers since Hume have asked: How can an empirical description of what “is” influence the formulation of normative claims about what “ought” to be? In Against Relativism, MacklinB articulates the dominant position within Anglo-American philosophy:

There is no denying that different cultures and historical eras exhibit a variety of m o d beliefs and practices. The empirical facts revealed by anthre pol@ research yield the descriptive thesis known as cultural relutiui&. But even if we grant that cultural relativity is an accurate description of the worlds diversity, whether anydung follows for normative ethics is an entirely Merent question. Do the facts of cultural relativity compel the conclusion that what is right or wrong can be determined only by the beliefs and practices within a particular culture or subculture?

Macklin‘s argument for a strong version of anti-relativism is grounded in her adherence to the idea that certain ethical principles are applicable cross-culturally. The notion of “common morality” is gaining currency in the field of bioethics. According to Veatch,29 “The core idea of a common morality is that all humans - at least all morally serious humans - have a pretheoretical awareness of certain moral norms. The claim is that normal humans intuit or in some other way know that there is something wrong with things like lying or breaking promises or kill- ing people.” In defending his views about the legitimacy of the concept and how it might be empirically examined, Beauchamp” is careful to differentiate between universally shared values and principles which are “located in the common morality” and moral norms (“particular moralities”) that are not universally shared by individuals or populations. This parsing of universality and particularity may help explain the diversity and malleability of behavioral norms for morality across cultures (or religions, or institutions) but it is less helpful in relation to the application of bioethics practices in particular international or culturally “different” settings.

DeGrazia3’ and Turner32 are skeptical about the possibility and applicability of a single common morality. Turner33 argues that while there might be agreement on minimal descriptions of ethics, consensus dissolves when there are

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attempts to translate general principles into policies or practical guidelines for action. He writes, “Agreement on ‘common principles’ need not, and often does not, translate into common understandings at the level of case analysis and policy formation.”” Turner’s criticism of philosophical approaches to justify a universal morality is based upon his claim that Beauchamp and Childre~s’~ and others provide little empirical evidence to support their arguments about the “role of particular moral norms in different societies, throughout the passage of time.”$ Indeed, the extensive work of anthropologists and others in the social sciences point to the extraordinary variability of moral understandings across ~ultures.~’ As EngelhardP notes in his discussion of bioethics as a global phenomenon, “It may be the case that humans in general are interested in such cardinal values as liberty, equality, prosperity, and security. However, depending on how persons rank these values, they will live within quite different moral viewpoints and af fm substantively different, settled moral judgments.”

h general, we accept a more nuanced view, arguing that the application of general principles is impossible to accomplish without detailed local knowledge. However, there is one universal principle or claim that requires special attention in our analysis: the claim of universal human rights, and the accompanying claim of a right to health care as central to the implementation of global j~stice.3~ Increasingly, bioethics’ attention to human rights follows from critical self-examination of the cultural sources of past errors, specifically, the field’s reification of individual choice and quandary ethics paired with a neglect of global equity. Although others may disagree, in our view these blind spots stem from bioethics’ American roots and its strong link with powerful interests, such as high-technology biomedicine. From the perspective of the clinic, it was hard to develop a vision that crossed borders.

Scholars in bioethics have begun to consider carefully broader structural issues contributing to global population health, including social, economic, and political factors influencing the disproportionate burden of disease throughout the world. Theorists directly link health with basic human rights. Considerations of social justice and health disparities - both within and between nations - are key dimensions of the new critique. Benatar, Daar, and Singer, for example, argue that bioethics has the potential to contribute significantly to improvements in global health:

Bioethics offers a way forward for global health reform through five transformational approaches: developing a global state of mind; promoting long-term self-interest; striking a balance between optimism and pessimism about globalization and solidarity; strengthening capacity; and enhancing the production of global public goods for healha

Benatar, Daar, and Singer believe that solidarity - between resource-rich and resource poor countries - is the underlying (and the primary) value that must be embraced in order to accomplish the necessary paradigmatic shift that would enable a reduction in global health disparities. Their critique recognizes that a focus on individual rights is vital but ”is not sufficient for the achievement of improved public health.”

A NEW Focus OF GroBAL Bomm EwcAno~,

In the last five years, there have been intensive efforts to globalize bioethics through educational programs, policy development, and infrastructure creation. In 2002, for example, the World Health Organhation (WHO) established a new Ethics and Health Unit; this unit was expanded to encompass ethics, trade, human rights and health law in 2003.41 The WHO initiative is committed to fostering the development of programs on ethical issues in biomedicine and science in both clinical and research settings world wide, particularly in resource-poor nations. For example, a short course on “Developing Healthcare Ethics Programs” is designed to facilitate or augment the implementation of ethics programs within healthcare organizations. Another recent project involves a commissioned report on ethical challenges in study design and informed consent for biomedical and behavioral research in resource-poor settings.

In the United States, the Fogarty International Center at the National Institutes of Health has established a strong program to support the development of bioethics initiatives through capacity building in resource-poor nations. For example, the Fogarty International Center has developed a robust training program in international research ethics. An important goal of this initiative is the establish- ment of a network of professionals who can create bioethics programs at institutions located in diverse communities throughout the world, particularly in areas where biomedical ethics has not yet developed. In addition, the Fogarty In- ternational Center was instrumental in establishing The Global Forum on Bioethics, now in its fifth year. The Glo- bal Forum is supported by a consortium of international agencies including the Fogarty, WHO, Pan American Health Organization (PAHO), the Medical Research Council (MRC) of the United Kingdom, and the MRC of South Africa. The Global Forum provides an oppommity for scholars and researchers to debate ethical challenges surrounding the production of scientific research and the implementation of biomedicine; the primary focus is on the developing world. In order to make this forum truly accessible, travel support is provided for individuals from resource-poor settings to participate in these meetings.

Do these efforts towards the globalization of bioethics represent positive movements or do they illustrate attempts to further promulgate Western notions of the “ethical” and

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“good”? In fact, there are both strengths and weaknesses in global bioethics initiatives. In general we support such efforts strongly, while at the same time questioning their assumptions; as noted above, such critique is central to the reflexive role we play as anthropologists. One might charge that bioethics training programs for professionals from less developed nations represent a hegemonic exportation of western ideology and values. Although opportunities might exist to engage in thoughtful dialogue about cross-cultural complexities surrounding bioethics, curricula often are based upon traditional western philosophical approaches, in particular the principlist approach associated with Beauchamp and Childress’ classic account.42

It is difficult for health professionals and researchers in the developing world to resist the strong and influential voice of Western bioethics for several reasons. First, for some individuals, embracing the tenets of bioethics might represent intellectual “progress” and modernity. Second, in the context of scientific research, US. National Institute of Health (NIH) and other sponsors of biomedical investi- gations require that researchers in host countries comply with international ethical guidelines for the protection of human subjects. Research funding is withheld until the standards are met; this means protocols must be reviewed by an authorized ethics committee, informed consent guidelines must be met, and so on. In some cases, researchers in host countries might experience these requirements as the seemingly arbitrary demands of those holding the purse strings, rather than as a genuine expression of ethical reflection and debate.

In the arena of international research ethics, tensions following from the globalization of bioethics practices are growing. In recent years, there has been extensive debate about the application of guidelines for human subjects’ protections in different cultural contexts.43 Although national and international policies have been established, researchers in the field face considerable challenges. Too often, ethical guidelines for research are simply exported without recognizing their inherent limitations in other settings. For example, international guidelines for informed consent rely heavily on the notion of individual autonomy and personal decision-making. Yet, in many cultural settings, decisions to participate in research are made within the context of the family or other social networks; in some situations, women may need to request permission from their husbands to participate in research.44 These conditions do not necessarily invalidate freedom of choice to participate in research. Rather, they call attention to the need for policy makers and researchers to be aware of local norms about decision-making patterns in societies with particular family or community structures. Moreover, the need to evaluate the potential for coercion to participate in research - in any cultural setting - goes well beyond norms for informed deci~ion-making.~~ The process of

obtaining consent might be conducted in strict adherence to all guidelines for human subjects, yet, if the study itself lacks scientific integrity or if the study involves unneces- sary risks, than real harms may come to participants, their families, or their communities - regardless of whether or not informed consent was obtained.

In addition to challenges associated with applications of informed consent, there may be structural impediments that exist withii institutions that make it difficult to fulfill international ethical regulatory requirements.& Independent ethical review of research protocols, for example, is an essential mechanism for reducing harms to participants through careful assessment of the risks and potential benefits of a study. However, effective ethical review of scientific protocols assumes that appropriate individuals are available to conduct reviews, that people have a shared understanding about the need for ethical review of protocols and the responsibilities associated with it, and that institutions have the technological resources available to perform an adequate review including funds for Xeroxing materials, access to computers for managing and tracking protocols, and support staff. It is important to note that issues of resource allocation for effective IRB approval are concerns in the U.S. and other industrialized nations, not just in developing world. Also, in some international settings, there is a danger of reproducing the same problems that confront IRBs in the industrialized world.

The power that international funding agencies have over the conduct of biomedical research cannot be underestimated; attention to power dynamics is one key element of an a n h pologid perspective focused on actual bioethics practice in social context. Scientists From resource-poor nations want to participate in international science initiatives; this contributes to their professional development just as it does for those in the U.S. or Europe. Moreover, the scientific research enterprise is an international economic force. Involvement in mearch means access to finandal and technological resources, educational training, and other direct or indirect forms of capacity building for host institutions, and for individuals and the communities and nations where they live. The pressure to conform to international ethical guidelines may create the illusion of consensus; rather than adherence to “universal” ethical principles, researchen may see human subjects protections as one more hoop to jump through. Nevertheless, real differences exist in the cultural norms and suuctural capabilities of institutions in diverse social settings where research is conducted. Despite the inherent and myriad challenges, we believe that efforts to promote appropriate application of widely-accepted ethical guidelines for the pmtection of human subjects in research must continue. But in order to accomplish this challenge, health professionals, bicethicists, and researches must genuinely engage a m cultural boundaries, acknowledging the “deep” structural and normative differences that exist.

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wm ExAmy Is “CULTURE”?

When we invoke the concept of culture in a globalized world we cannot employ the old fashioned idea of culture as a static entity, ahistorical, socially and geographically isolated. From this perspective, the beliefs, traditions, and material products and symbols of culture are unchangeable, fixed in time and place. By contrast, in an era of instanta- neous global communication, culttw is necessarily porous, mutable and dynarmc.*’ We argue that bioethics must take account of culture. But, what exactly is “culture”? An* pologists working in the shadow of Franz Boas’ seminal early twentieth century work distinguishing race from culture emphasize that culture is learned - it is not in our genes - and culture is something shared by a group of people. As KupeFB points out in his discussion of cultural difference and identity, “Culture is . . . essentially a matter of ideas and values, a collective cast of mind. The ideas and values, the cosmology, morality, and aesthetics, are e x p d in symbols, and s-ince the medium is the message - culture is best described as a symbolic system.”

Cultural appropriation of other’s beliefs, technologies, resources, and ideologies influence the continuous and progressive blending and mixing of the “stuft” of culture. This plasticity speaks directly to the desire and creative capacity of human beings to incorporate concepts and material goods that represent innovation. Bioethics practices are not immune to reinterpretation and shaping to meet the needs of local people. Practices may be embraced by necessity, but their final meaning will be negotiated in cultural context, not decreed by the funders of international research. Constant border crossing is the norm, not the exception, among human beings.@ Appadud’ refers to the van’.ous forms through which cultuml material moves between national boundaries as “ethnoscape, financescape, technmpe, mediascape, and ideoscape.” These global processes effectively shrink the distance between the metaphorical “Us” and ‘Them.’’ Simultaneously, this flow of cultural material can successfully reinforce strong ethnic and cultural identity even among groups living in diaspora.

The circulation of cultural artifacts may be strongly contested by individuals and communities who want to maintain their identification or ownership of ideas, symbols or technologies. The moral complexities and structural deterrents to securing a tight rein on the flow of cultural products is thoughtfully reviewed by who asks simply: “Who owns native culture?” Brown argues persuasively that it is virtually impossible to stop human beings from borrowing cultural forms, particularly given the porous boundaries that allow access to each other‘s rich array of cultural heritage.

Although there are some who would suggest that “culm” is a vague anthropological concept, it has a common sense reality that is embraced and experienced by most of

us who idenufy with a certain way of being in the world; in fact, we are all multicultural beings - living in worlds of multiple cultural identities. We are born into one world, and perhaps as adults live in another world where we move between our cultural references of family, work, and community. In addition, there is a very real sense of meta-cultural identity articulated most profoundly in the sphere of politics and ethnic strife.

Appad~rai,~~ in his discussion of cultural difference in the context of globalization, argues for the importance of culture as a key form of boundary maintenance for group identity. Similarly, KuperJ3 describes the way in which cultural identity is strongly tied to cultud politics and suggests that “cultural survival is the bottom line of this politics.” In his classic essay on the politics of cultural difference, Taylor% suggests that there is an inherent tension between the desire of ethnic minority groups to claim their unique cultural attributes while, at the same time, calling for treatment that recognizes they are the “same” as the dominant culture. Conflicts over cultural legitimacy reflect the inten- sity of the deep-seated emotions attached to our sense of identity - as an individual and as a member of a social group. In culture wars, what is at stake is the fundamental experience of cultural aff i i t ion and acknowledgment. What is contested is not only the saliency of a cultural ideology, but also in some cases access to social, economic and political power in relation to other groups. 55

W i r y C U L T o R E ~ I N ~ a Is thinking about “culture” the wrong way for bioethics to proceed in the twenty-fmt century? We believe the answer is both “yes” and “no,” depending upon how culture is defined, interpreted and applied to the broad range of moral issues that arise in the production and applications of science and medicine. In the field of bioethics - and in biomedicine more generally - approaches to the concept of culture have lacked nuance and sophistication. The account of culture provided above does not fit easily into the reductionist paradigm of biomedicine. Too often, in both bioethics and biomedicine, notions of culture are essentialized, or broken down to a simplistic, easily defined essence: Latinos exhibit a deep respect for family ybrnilbno), or Asians respect the elderly. This results in “thin” descriptions of social and cultural diversity, produc- ing short-hand, stereotypical accounts more suited to a brief coufse on “cultural competence” than a deep understanding of the concept of culture, its epistemological complexities, or its implications for human behavior. Yet denying the importance of cultural background and beliefs, and their significant power to shape and transform the meanings attached to the experience of health and illness, sustains a rendering of bioethics deprived of the richness of cultural context. Moreover, if we deny the

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possibility of cultural analysis of complex moral issues in science and medicine, we minimize the opportunities for a critique of the field of bioethics itself.

An approach to bioethics that promotes a universal tem- plate for moral understanding flies in the face of the multiple and complex realities lived by people everywhere. While it is useful to recognize meta-ethical principles that might reflect a common morality - one that c~osses cultul-al boundaries - the application of these general principles in diverse clinical or research settings in particular communities will not necessarily conform to an idealized articulation of moral universals. For example, although h4acklin56 makes a stmng case for univedy s h a d ethical principles, she acknowledges that some bioethical practices might need to be altered in culturally d i v e setting. The symbolic power of words in mditional Navajo society influences the ability of individuals to speak openly about a poor prognosis. Many individuals believe that speaking openly about a possible negative outcome may actually bring on death; this makes it difRcult for clinicians taught to disclose the truth to discuss advance care planning or to explain the risks of clinical research.” In her discussion of a clinical compromise about how much information to disclose - a compromise thought to respect Navajo beliefs about avoiding negative topics - Ma& concedes that, “A degree of ethical relativism is undeniably present in the less- than-ideal version of informed consent, and it does admittedly constitute a ‘lower‘ standard than that which is usually appropriate in today’s medical practice.”58 Although she agrees that in some cases it may be appropriate to consider cultural difference when applying ethical standards, h 4 a ~ k . h ~ ~ justi- fies this by noting that “flexibility” (in the application of ethical rules) is “consistent with adherence to more fundamental ethical principles,” not by recognizing that morality is culturally

Macklin’s discussion of communication with Navajo patients illustrates the way in which the discipline of philosophy has an understanding of culture that differs from that employed in the social sciences. Generally, analytic philosophy as a field has not engaged in the post- modem discussion of the “culture” concept. Thus, the notion of culture has been used as a synonym for ethnicity (or a particular ethnic group) as opposed to a construct refer- ring to cultural processes that can be applied to a wide range of institutions and behavior - including cultural processes relevant to science itself, and to the field of bioethics and its practices. Macklin, for example, notes that “not every set of norms deserves to be called a culture,” and that, “‘the culture of Western medicine’ is not the genuine sense of the term.”61 Many social scientists would dispute her designation and general restriction of the concept of culture to distant “others” either abroad or in ethnically diverse areas within a national context.

Another perspective on bioethics and the treatment of cultural difference is provided by Myser62 in her recent


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essay criticizing the “Whiteness” of American bioethics. Myser admonishes bioethics for silencing the voices of “Others” (people of color in the US., culturally “different” populations). Her treatment of cultural difference provides a perspective on “otherness” that acknowledges the ways in which bioethics has been unreflective about its “whiteness.” Yet, as Baker63 rightfully argues, would Myser deny that African Americans and other ethnic minorities may hold dear the traditionally “American” (read white protes- tant) values of individualism, autonomy, rights, beneficence, justice and other values attributed to bioethics? Myser’s critique is broad based. For example, she accuses Renee Fox of not going far enough in her attempts to call attention to cultural variability in relation to bioethics. This critique is surprising since Fox provided the first clear assessment of bioethics’ Western orientation, demonstrating the narrowness of the field’s vision, and she has remained a strong critic of bioethics practices that fail to account for cultural context. Nevertheless, Myser’s critique is a good reminder to question our cultural assumptions, to think reflexively about who we are and how we are positioned in relation to others, and to be transparent in our acknowledgement of the historical legacy we share that created and reproduces racism. In the end, Myser‘s rhetoric is not helpful in facilitating pragmatic solutions that move beyond embracing cultural difference while simultaneously espousing an ethic of universality and human rights.

~ K I N G A H ~ A D IN B I O ~ C S Bioethics must widen its focus beyond its Western view to incorporate and acknowledge moral pluralism and cultural variation or it will lose its relevance and applicability for most of the worlds’ population. Perhaps the key question for reconfiguring bioethics in a way that recognizes and accounts for cultural difference is simply this: Can bioethics lose the stamp of its American cultural origins? At stake here is the saliency and credibility of the profession - and the practices it upholds - in the global arena. At stake is the ability of bioethicists and others associated with the field to actively engage in thoughtful debate about the implications of cultural difference and its consequences for the production of science and its applications worldwide. At stake is our capacity to achieve praxis in the way we promulgate and “do” bioethics in diverse cultural terrains.

How does bioethics need to change to be more relevant cross-culturally? If it sheds its American focus on individualism will it become “something” else? Bioethics will necessarily change as it continues to incorporate the arguments and sensibilities of cultwal dit€mce into its fundamental underlying ideology. As contextual approaches to ethics have Shawn in recent years, the Georgetown mantra loses its prin- cipled rigidity as m n as social context and its inherent moral ambiguity become a part of its interpretive structure.

me Journal of Law, Medicine C Ethics

There are two particular areas in which it is imperative for bioethics to revise its basic orientation in order to become culturally relevant and globally “aware.” First, as we suggest above, it is vitally important that bioethics attend to social justice and focus attention on the broad goals of population health. Benatar, Daar, Singer” and others have argued strongly for the explicit recognition and inclusion of social justice for the development of a contempomy global bioethics. As Farmer65 observes, ‘Without a social justice component, medical ethics risks becoming yet another strategy for managing the poor,” Second, bioethics must consider social context, especially the impact of political economy on the moral dimensions of science and healthcare. Here we are signaling the importance of social contexts and their variability both within and between national boundaries. The rich and complex articulation of beliefs and behavior first created, and then reinforced, by different social contexts affects mom1 judgments that people make themselves and moral judgments that are made about them. These shifts in bioethical perspectives encompass a full spectrum of issues including: how we decide what constitutes an “ethical” dilemma and who gets to decide what the dilemmas are, allocation of resources, access to health services, medical decision-making, the development of policies governing research and clinical work, and the production of new knowledge in science and technology.

Attention to Social Justice and Human Rights In the arena of human rights and population health, bioethics must address the systematic and powerful ways in which structural forces influence morbidity and mortality in diverse populations. In his recent essay introducing a volume of the Journal of Law, Medicine, and Ethics dedicated to emerging issues in population health, Gostin6 outlines four areas that are critical to our understanding of the ethics of global public health. Infectious diseases are the major cause of mortality globally, and differentially affect the poor in both the industrialized and developing world. A wide range of chronic illnesses such as heart disease, diabetes, and cancer are increasing in resource- poor regions of the world. Additionally, war, and its associated civil conflict and instability, including the displacement of populations through migration, contribute to the spread of pathogens worldwide. Finally, acts of bio-terrorism, following the events of September 11, increasingly threaten the health of populations. Underlying each of these four challenges to the well-being of human populations are fundamental ethical concerns about social justice and what individuals, communities, and nations define as “the good” (and how to achieve it) in their worlds.

Some of the key questions raised in considering the

human rights: Who should have access to health care services? Only those who are privileged with f m d means or the good fortune to be born in a place, a family, where resources are available? Who are the gatekeepers in deciding how resources become available to individuals and communities? How are these decisions made? Are we obligated - ethically - to account for the great disparities that exist in population health between the North and the South, between the fortunate and those less privilegdi A number of scholars representing diverse fields in the social sciences, law, medicine, and bioethics argue strongly that international health disparities cannot be separated from structural inequities and human rights abuses6’ In their insightful and substantive analysis of the requirements for a globally relevant bioethics, Benatar, Daar, and Singer call attention to the relationship between structural factors that affect population health and international politics that contribute and, in some cases, reinforce inequities:

These changes [changes in world health disparities1 call for interest in health and ethics to be extended beyond the micro-level of institutions and nations and at the macro-level of international relations. Extending the discourse on ethics towards a more comprehensive approach could promote the new mindset needed to improve health and well-being globally. Such a mindset requires a realization that health, human rights, economic oppoxtunities, good governance, peace and development are all intimately linked within a complex, interdependent world.@

Paul Farmer,@ who is dedicated to addressing human rights issues in international health, is critical of any efforts to excuse or tolerate suffering and structural violence, particularly when attempts are made to invoke the “culture argument” to rationalize disparities. In his work combating the HIV epidemic, for example, Farmer and his colleagues at Partners in Health rejeaed the widely-held belief that only AIDS paention strategies - but not twahumt- should be used in resoufce p r countries, that cultural beliefs inevitably lead to noncompliance with complex medication regimens. Their successful use of anti-AIDS drugs in Haiti desmyed the rationaljzation that therapy would not be cast effective in certain cultural groups.m Their efforts included systematically changing some of the underlying structural problems that prevented effective matment such as &talizing the public- h d t h infrasuuaure, hiring and training local health workers to do active case fin- and monitoring of therapy, and inateasing wages of staff to diminish the pcsibility they would leave the d area to find work in Port au Prince.

relationship between bioethics and social justice speak directly to our understanding of cultural difference and

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Attendon to Sodal context The second broad area that bioethics must systematically address is social context, particularly political and economic factors that influence profoundly the quality of life and the experience of suffering or health for individuals and populations worldwide. As deVries7’ and Farmer and Gastinea~~~ argue elsewhere in this journal, and others have argued as well, the bioethics “program” is embedded in social contexts.73 Thus, a full account of the relationship of cultural difference to bioethics necessarily involves explora- tions of the nature and implications of moral questions generated by the development of biomedical technologies, how they are used by researchers and health providers, and how they are differentially applied to diverse populations.

The African American experience of health disparities in the U.S. provides a good example of why it is imperative for bioethics to consider the primacy of social context in thinking about ethics, science, and biomedicine at all levels, including research, clinical care, and access to health services. Studies indicate that African Americans are reluc- tant to limit or forego medically futile treatment at the end of lie.’* A lack of “trust” is frequently implicated to explain choices for aggressive medical care. However, African American concerns about the potential for mistreatment or neglect in clinical settings is historically well justified. Consider the legacy of Jim Crow segregation in hospitals, or the abuses of the Tuskegee Syphilis Study.‘ls Historically, racist practices in medicine have contributed to significant health disparities between blacks and whites in the U.S. Studies show that the health status of whites is better than ethnic and racial minorities even when income, education and other factors are ~ontrolled.~~ Results of a study of racial differences in the use of procedures for hospitalized patients indicate that for nearly half of the disease categories examined, blacks were significantly less likely to receive a major therapeutic procedure than whites.” In this study, investigators controlled for age, diagnosis, severity of the problem, and health insurance. Ignoring the political economy of social context, including the long term consequences of entrenched racism, severely limits our capacity to analyze critically the underlying ethical dimensions of biomedical practice or research.

PU~URECHAUENGES:TH~GIDBAL~~APPICMHUMAN ORGANS

Within biomedicine, the practice of organ transplantation provides a revealing case study. Social context - including religious and cultural traditions that shape ideas about the appmpriate use of the human body and economic conditions affecting the availability of biomedical resources - has influenced the development of human organ transplantation in myriad and diverse ways.78 Studies of organ

replacement therapy, a favorite topic of cultural analysts, demonstrate how the human body itself is transformed into “spare parts.”” Debates about the use of brain death criteria call attention to the importance of cultural influences on our understanding of the meaning of death and its timing in relation to organ transplantation.@’ In her comparative analysis of Japan and North America, Margaret LocP’ explicates the cultural and political sources of stead- fast Japanese opposition to the concept of brain death. In so doing, she highlights a parallel question, one previously unexamined: Why have North Americans accepted the new definition of death so easily? In the West, attention was placed on the life-saving heroics of transplantation and the altruistic importance of donating “the gift of life,” not on the source of the organs or the circumstances surrounding their retrieval. Fundamental m d questions about transplantation -whose oxgans should be replaced, whose may be “harvested,” when is a donor “dead enough” - are deeply contingent upon social context, varying by beliefs about the location of the soul, the integrity of the physical body and the existence of an afterlife, beliefs that are negotiated within local economies and political amngementsE2

Developments in surgical technology and pharmaceu- ticals have encouraged the growth of organ transplantation (particularly of kidneys) as an international enterprise, a trade enabled by organ brokers who manage financial exchanges between sellers and purchasers. The emerging global trade in human tissues and organs illustrates coming challenges for bioethics. Can such forms of exchange be considered “ethical,” particularly across national boundaries, with organs flowing from south to north, from those living in poverty to the wealthy? Can bioethics practices designed to protect a potential donor/ seller‘s bodily integrity (as well as rights to control his or her body) be universally applied? When considering these emerging forms of exchange, it is vitally important to take into account both social justice andsocial context. Critics have charged that this practice sienifies the new status of human organs as a source of working capital for poor laborers in developing c0untries.8~ Myriad ethical quanda- ries surround the commoditization of bodies that accompanies the marketing of human organ^.^ Organ sales are often “documented with paperwork assurances of voluntary grftulg. Is the bioethics concept of informed consent to donation relevant in settings with pervasive corruption? What are the boundaries between human rights abuses and simple market transactions?

A market approach that would allow individuals to sell their organs is justified by some scholars using a neolibeml language of rights, a discourse that is in many ways compatible with bioethics arguments that privilege individual choice and control of one’s b0dy.8~ In his examination of the changing discourse about financial incentives for donation (from both living and cadaveric

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donors) since the origins of US. transplantation, Jodemons6 highlights the impact of a public relations campaign designed to minimize public resistance to donation. Bic- ethics debates, in response to intense pressure to increase organ supply, have shifted from vehement opposition to any financial compensation for organs to a guarded approval by some analy~ts.~’ For example, in revisiting the issue of financial incentives for organ procurement, VeatchBs acknowledges his ambivalence about the idea, but argues that, “The one offering the incentives (the government) has the resources to eliminate the basic needs that pressure the poor into a willingness to sell . . . .As long as the government continues to withhold a decent minimum of welfare, liberals should, with shame, cease opposing financial incentives for organ procurement.”

In contrast to this ambivalent resignation about the acceptability of financial incentives, Khanm is unconvinced that a market approach is the solution; he specifically rejects policies that would condone the sale of organs, a w - ing that the potential for exploitation exists even when efforts are made to minimize the conditions that lead to abuses. We suggest that the implications of these debates cannot be contained wihn national borders. We must ask how even a limited endorsement of financial incentives to donation in the developed world might affect the situation globally, since bioethics policies and practices flow easily - along with technologies and organs - across national boundaries.

Whether one characterizes the current imbalance between supply and demand as an “organ shortage” or as evidence of an everescalating “rapacious demand,”% it is unlikely that the global trade in organs will disappear. With its focus on clinical decisions for individual patients, bioethics has been unsuccessful in addressing head on the implications of a growing neoliberalism. The international procurement and distribution of human organs for transplantation, coupled with new approaches to fmncial incentives for organ donation domestically, must be examined as an issue of fundamental human rights, not simply as a set of straight-forward market transactions that can be regulated effectively once the correct procedures are in place. A thoughtful engagement with the ethical challenges of human organ transplantation requires that bioethics pay close attention to existing social inequalities and to the social context of the transplantation enterprise - including the cultural construction of beliefs about the body, person- hood, and biomedical authority. In our view, a forceful cultural account must question the often unexamined assumptions underlying transplantation, including its impact on global public health and human rights.

CONCLUSION Predicting the future is inevitably a risky business. In this essay we have tried to show how a bioethics informed by

attention to social context, and sensitive to cultural difference, might look in future decades. Detailed analysis of and attention to the social, political, and economic context will not necessarily solve every ethical dilemma, but it will certainly avoid mistakes based on the ndve assumption that applying solutions derived from the U.S. to resource- poor, developing world problems is adequate. Exporting the American institutional review board system to sub- Saharan Africa may allow compliance with federal regula- tions, but without attention to the local cultural context does little to protect research subjects. Although enhancing individual freedom and choice is a laudable goal, in the context of extreme poverty, relying on the agency of potential organ sellers to assure equitable and just exchange practices will inevitably fail. The desperation of first world organ purchasers, combined with the potential profits to be made in a global market for human organs, demand solutions that realistically account for differentials in power and access to social capital.

We have argued that attention to the actual practices, not just the theoretical foundations, of bioethics is of great concern. It is insufficient simply to assume the applicability of legalistic procedures - based on broadly-stated principles - in diverse settings across the globe. Genetic counseling with full informed consent may be an inadequate safeguard against a new self-imposed eugenics in the context of the rapidly commercializing medical marketplace. In some cases the incommensurability of western bioethics procedures with foundational bioethics theories may lead to the reexamination of those theories. Empirical bioethics research that is attentive to context may provide more than just “descriptive ethics.” The field will benefit most from approaches combining attention to foundational issues with careful analysis of context.

For those working in the field of bioethics, our greatest challenge is maintaining the reflexive stance characteristic of the best social science. We have argued that a culturally- informed bioethics will remain critical of its own goals, re-examining them when challenged. The emerging emphasis on issues of population health and global justice is heartening. Our global environment precludes “business as usual”; the field of bioethics can no longer focus its energy and attention on the ethical dilemmas experienced by individual patients privileged by social status with too much medical care. We see these trends - based on recognition of disappearing boundaries and transformations of political economy - as a positive sign. Daniel Callahan might read these same trends as suggesting that bioethics is finally - after a detour into the narrow realm of clinical ethics - returning to its original goal: a critical exarnina- tion of the broad goals of science and biomedicine, based on a commitment to situate health and medical care in debates about how to achieve a good and just society.

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A~KNOWLEDGEMWTS We wish to thank the special issue editors, Jeff Kahn and Anna Mastroianni, and a n anonymous reviewer, for challenging us to reign in our disciplinary biases and make our points clear to an inter-disciplinary audience. We also want to thank Carla Fenves for her editorial assistance.

IbFERENcEs 1, See, e.g., R. Macklin, “Ethical Relativism in a Multicultural

Society,” Kennedy Institute of Ethics 8, no. 1 (1998): 1-22; R. Baker, “A Theory of International Bioethics: Multiculturalism, Postmodernism, and the Bankruptcy of Fundamentalism,” Kennedy Institute of Ethics Journal 8, no.3 (1998): 101-32; R. Baker, “A Theory of International Bioethics: The Negotiable and the Non-negotiable,” Kennedy Institute of Ethics Journal 8, no. 3 (1338): 233-74; P.A. Marshall, D.C. Thomasma, J. Bergsma, “Intercultural Reasoning: The Challenge for International Bioeth- ics,” Cambridge Quarterly OfHealthcare Ethics 3 (1994): 321-28; E.D. Pellegrino, “Is Truth Telling to the Patient a Cultural Arti- fact?” JAM4 268 (1992): 1734-35; R.J. kvine, .“Informed Consent Some Challenges to the Universal Validity of the Western Model” Law, Medicine, and Health Care 19 (1991): 3-4.

P. Farmer, Pathologies of Power(Berke1ey: University of California Press, 2003): 203.

2.

3. Id.at 203. 4. J. Rawls, A lheory ofJustice(Cambridge, Mass: Harvard

University Press, 1971); M. Walzer, Spheres ofJustice: ADefmeof Pluralism and Equality (New York, Basic Books, 1983); J.D. Moreno, Deciding Together (Oxford: Oxford University Press, 1%); H.T. Engehdt, Jr., “Morality, Universality, and Paiticuhity: Rethinking the Role of Community in the Foundations of Bioethics,” in J.T.L. Po-Wah, ed., Crw-Cultural Perspectives on the (ImIPossibility of Global Bioethics (Dordrecht: Kluwer Academic Publishers, 2002: 1540).

Neoliberalism, as distinct from classical liberalism, refers to a quasi-religious belief in the market, and in market forces, separated from the actual production of goods and services. Market forces become ends in themselves, and hence social scientists speak of neoliberalism and not of liberalism. Market metaphors are applied to domains of human life, such as control of bodily integrity or body parts, that expand the bounds of liberal economics to domains previously considered off limits for inclusion. At its most extreme, neoliberalism becomes a philosophy of life, not simply a description of an economic structure. In this view, every human being is an entrepreneur managing his or her own life. In summary, neoliberalism is a philosophy in which the existence and operation of markets are valued in themselves, separately from any previous relationship with the production of goods and services, and without any attempt to justfy them in terms of their effect on the production of goods and services; and where the operation of a market or market-like structure is seen as an ethic in itself, capable of acting as a guide for all human action, and substituting for all previously existing ethical beliefs. The concept is widely used in critical social science today, and is associated with the sociologist Pierre Bourdieu, among others.

R.W. Lieban, “Medical Anthropology and the Compara- tive Study of Medical Ethics,” in Social Science Pmspectim on Medical Ethics, George Weisz, ed. (Philadelphia: University of Pennsylvania Press, 1990); P.A. Marshall, “Anthropology and Bio- ethics,” Medical Anthropology Quurterly 6 (1992): 43-73; J.H.

5.

6.

Muller, “Anthropology, Bioethics, and Medicine: A Provocative Trilogy,’’ Medical Anthropology Quarterly 8 (1334): 448-67; P.A. Marshall and B.A. Koenig, “Anthropology and Bioethics: Perspectives on Culture, Medicine and Morality” in Medical Anthropology: Contemporary ‘Iheoty and Method, 2nd edition, C. Sargent and T. Johnson, eds. (Westport, m. Praeger Publishing Co., 1996); A. Kleinman, “Anhpology of Bioethics,” in Encyclo- pedia of Bioethics, W. Reich ed. (New York: Macmillan, 1995); A. Kleinman, “Moral Experience and Ethical Reflection: Can Ethnog- raphy Reconcile Them? A Quandary for ‘The New Bioethics,”’ Daeah1u.s 128, no. 4 (1999): 69-97; H. Coward and P. Ratanahl, eds., A Cm-Cultuml Dialogue on Health Care Ethics (Waterloo, Ontario, Canada: W i d Iaurier University Press, 1999); P. Brodwin, ed., Blotechnology and Culture: Bodies, Anxieties, Ethics (Bloomington, IN: Indiana Univ. Press, 2000); L. Turner, “Bioethics in a Multicultural World: Medicine and Morality in Pluralistic Settings,” Health CareAnulyiis 11, no. 2 (2003): 39-117.

S.M. Wolf, “Shifting Paradigms in Bioethics and Health Law: The Rise of a New Pragmatism,” American Journal of Law andMedicine 20, no. 4, (1994): 395-415.

See, e.g., D. Rothman, Strangers at the Bedside: A History of How Law and Bioethics Transformed Medical Decision-Making (New York: Basic Books, 1991).

R.C. Fox and J.P. Swazey, “Medical Morality Is Not Bio- ethics - Medical Ethics in China and the United States” Perspectim in BiologyMedicine27 (1984): 336-60; R.C. Fox, “The Evolution of American Bioethics: A Sociological Perspective,” in SocialScience Perspectim on Medical Ethics, G. Weisz, ed. (Phila- delphia: University of Pennsylvania Press, 1990); G. Weisz, Social Science Perspectims on Medical Ethics (Philadelphia: University of Pennsylvania Press, 1990); R. DeVries and J. Subedi, eds., Bio- ethics and Society: Constructing the Ethical Em%pr&(UppSaddle River, N,.J,.: prentce Hall, 1%); PA Marshall and BA Koenig, “Anthropology of Bioethics,” in Encrcropedia of

1999, supra note 5; lluner, 2003,1999, suprcl note 4.

Principlism,” Hastings Center Report 30, no. 5 (2000): 31-38, at 37.

7.

8.

9.

BicetMcSMedieion, s. P O ed. (NewYork: Maanillan, 2003); Kleinman,

10.

31. 12.

13. Id. 14.

J. Evans, “A Sociological Account of the Growth of

See Fox 1984 and 1990, supra note 7 . D. Callahan, “The Social Sciences and the Task of

Bioethics,” Daehlus 128, no. 4 (1999): 275-94, at 279.

G. Frank, L.J. Blackhall, V. Michel, et al, “A Discourse of Relationships in Bioethics: Patient Autonomy and End-of-Life Decision Making among Elderly Korean Americans,” Medical AnthmplogyQuarterly12 (1998): 403-23; T.S. Drought and B.A. Koenig, “‘Choice’ in End-of-Life Decision Making: Researching a Fact or a Fiction?” ’Ihe Gmntologist 42 (Special Issue 111) (2002): 114-28.

15. 16. See id. at 280. 17. 18.

See Callahan, supra note 10, at 279.

R. De Vries this issue. Scholars such as Carl Elliott have called attention to the

potential conflict of interest issues within bioethics itself. Who funds the bioethics enterprise? Can one truly be independent when competing for funding from the biotechnology or pharmaceutical industry? See, e g , C. Elliott, “Pharma Buys a Conscience,” lhe A m c a n Pmpect 12, no. 17 (2001) vo1.17: 16-20.

19. See Callahan, supra notelo. 20. See, e.g., Farmer, supra note 1; J. Mann, S. Gruskin,

M.A. Grodin, and G.J. Annas, Health and Human Rights (New York: Routledge, 1999).

21. 22.

See Callahan, supra notelo, at 283. R. Rapp, Testing Women, Testing the Fetus: m e Social

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Impact ofAmniocentesis in America (New York: Routledge, 2000). 23. Id. 24. Id. at 37-38. 25. Of course some women do actively chose prenatal

diagnosis (in spite of beliefs in opposition to abortion), in order to plan for the care of an ill or dying infant. However the work of Nancy Press and Carole Browner demonstmtes that particularly for individuals from impoverished or culturally diverse backgrounds, the use of prenatal diagnosis is often not an active or conscious choice involving planning, even for those opposed to abortion. See, e.g., N. Press, C.H. Browner, and H. Carol, “Char- acteristics of Women Who Refuse an Offer of Prenatal Diagnosis: Data from the California Maternal Serum Alpha Fetoprotein Blood Test Experience,” American Journal ofMedica1 ceneticli78 (1998): 433-45.

26. S . Beck, “Genetic Transparrncy and Social Unpredictability: Remarks on a Genetic Screening Progtam in Cyprus,” paper pre- sented at the Stanford Center for Biomedical Ethics. Program in Genomics, Ethics, and Society, December 19,2000.

See, e.g., J.T.L. Po-wah, ed., Craw-Cultural Perspctitm on the (Im) Possibility of Global Ethics (Dordrecht: Kluwer Aca- demic Publishers, 2002).

R. Macklin, Against Rehtiuism: Cultural D i m i t y and the Search forEthicaI Unimals in Medicine (New York: Oxford University Press lW), at 4 .

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Documents

Accounting for Culture in Globalized Bioethics