Anthropology and Bioethics

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ANTHROPOLOGY AND BIOETHICS

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In recent years a growing number of anthropologists have turned their attention to the discipline of biomedical ethics. Bioethics traces its origins as a distinct field to the styles of reasoning and reflection found within analytic philosophy and legal scholarship. In its early decades, work in bioethics relied heavily on principle-based analysis, an approach that often led to critiques of the moral dimensions of healthcare practice divorced from underlying social, cultural and political context. Often called the "empirical turn" in bioethics, social scientists utilizing diverse theoretical and methodological programs have questioned approaches to healthcare ethics that fail to account for context (Weisz; Hoffmaster, 2001; DeVries and Subedi; Brodwin, 2000).

Researchers in medical anthropology represent one arm of a strong, and growing, internal critique of bioethics. In addition to social science voices, this critique includes diverse perspectives within philosophy, such as feminist readings of core bioethics dilemmas and a resurgence of interest in the traditions of American pragmatism and casuistry. Even philosophers working within the Kantian tradition have called attention to bioethics' need to balance attention to "institutional and professional realities and diversities" with philosophical rigor (O'Neill, p. x). O'Neill questions the primacy of autonomy, to the exclusion of a focus on relationships of trust and trustworthiness, in contemporary bioethics discourse.

This entry explores how anthropologists working in the field of bioethics bridge the gap between conceptions of medical morality grounded in local worlds and the universal understandings espoused within the western philosophical tradition. Ongoing debates about relativism from the perspectives of anthropology and philosophy also are addressed with special attention paid to the implications of a "culturally informed" practice of bioethics. Culturally diverse understandings of the meaning and expression of personhood are highlighted in order to illustrate difficulties that emerge when one tries to judge certain practices as good or bad, appropriate or inappropriate. An anthropologically informed bioethics produces a fuller account of healthcare practices, an account that grounds ethical universals such as respect for persons in local moral worlds.

The body of empirical work reviewed below reveals the thinness of bioethics accounts that disregard social context and that celebrate a particular (often American) version of individual autonomy. Ethical analyses centered exclusively on individual actors create strong barriers to understanding the troubling conflicts that emerge in multicultural worlds, especially in the arena of social justice and human rights. A simplistic application of ethical universals to particular cases discounts the complexity of lived experience and real world dilemmas. In the same way, a naïve and unqualified acceptance of ethical relativism diminishes the potential of negotiating moral consensus across cultural boundaries. An anthropologically grounded framework for bioethics requires a solid recognition of the cultural assumptions that underlie our definition of the "good" in biomedicine. An anthropologically informed bioethics calls attention to the social, political and structural factors that affect the production of scientific and clinical knowledge and its application in the practice of global biomedicine.

Anthropological Approaches to Bioethics

Today the field of bioethics is uniquely multidisciplinary, indeed it is perhaps best understood as a cultural space in which scholars from many fields interact, joined together by topical interests. However, anthropologists and other social scientists did not play a significant role in the initial development of the field (Fox).

In his analysis of medical ethics, Lieban (pp. 221–222) suggests two key reasons why anthropologists have been absent. First, given the strong history of cultural relativism in anthropology, studies of health and illness conducted by anthropologists have generally avoided what might be construed as ethnocentric value judgments about other systems. Anthropological focus on documentation and description—as opposed to normative analysis—excludes questions about what is morally "right" or "wrong" about particular health practices.

Second, medical anthropologists have often worked in non-Western settings where the technological challenges provided by contemporary biomedicine are less salient. In addition, Marshall (1992) suggests that bioethicists—unlike anthropologists—have concentrated their attention on the individual rational actor as the primary unit of analysis. Although in recent years bioethics scholars have begun to acknowledge the importance of social milieu—for example the role of family—in constructing individual choice and shaping decision options, anthropologists, in part because of their traditional subjects, have generally theorized a more complex self, viewing the individual as firmly embedded within a broader social and cultural context. The notion of autonomy, or respect for persons, which many acknowledge has been over-celebrated in bioethics clinical discourse, presumes an individuated self, set apart from the collective experience of family or community, and triumphant over other critical values. These explanations, however, represent fairly superficial explanations for the lack of anthropological representation within or interest in bioethics. In fact, the unwillingness of anthropologists to engage with ethics (and for philosophers to reach out to social scientists generally) reflects deep seated disciplinary boundaries and conflicting epistemologies (Edel and Edel).

The concept of culture is rarely a starting point in ethics; by contrast, pioneering discussions of comparative medical ethics by anthropologists emphasized the importance of a cultural foundation for framing ethical issues in healthcare. For example, Kundstadter addressed ethical challenges associated with development projects in Third World communities, noting the relevance and importance of cultural context for understanding moral dilemmas surrounding health and illness beliefs and healing roles. Practices such as treatment of less than perfect newborns cannot be adequately understood, much less judged, without detailed local knowledge. Approximately a decade later, Fabrega and Lieban examined the potential of "ethnoethics" for cross-cultural studies of the moral dimensions of health practices. A key starting point is the recognition of variation in the issues that different societies define as morally relevant or problematic. The role of healer is also critical, including the nature of interactions between healers and their patients, interactions among healers themselves, and finally, interactions between practitioners and the larger society.

As engagement with scholars working in healthcare ethics increased, anthropologists have questioned the fundamental schema underlying bioethics, urging greater attention to the lived experience of human suffering and to the social dynamics of local context (Muller; Koenig, 1996; Kleinman, 1995, 1999; Marshall and Koenig, 1996, 2000). Cultural interpretation situates the moral dimensions of healthcare in local ethical practices and local notions of the good. This traditional anthropological orientation to ethics and morality is antithetical to the universalizing discourses of both basic science—which assumes that scientific principles and rules apply to human bodies in all times and places, and to the discourse of the philosophical traditions dominant in bioethics—which define a good ethical theory as one that can produce "objective" results that yield rational standards by which to judge actions, irrespective of their history or locality (Marshall and Koenig, 1996, 2000).

Medical anthropologist Arthur Kleinman (1995), in his critical analysis of the assumptions and theoretical foundations of bioethics, suggests that the new field is fundamentally ethnocentric, psychocentric, and medicocentric, and thus shares, rather than moves beyond, biomedicine's fundamental limitations. Kleinman argues that bioethics has failed to engage with the major non-Western moral traditions or to question the "orthodox sources of the self within the western philosophical tradition" (p. 1669). The medicocentrism inherent in bioethics constrains practitioner's ability to elicit a complex illness narrative despite the fact that bioethicists are charged with listening to patients and taking account of their perspective and preferences. Although Kleinman maintains optimism that bioethics may open up space in clinical practice for genuine moral reflection and debate, he remains concerned about the limitations of a bioethics devoid of attention to cultural locality: "In the end, then, ethics, once framed as models of moral reasoning championing the reflection and rational choice of autonomous individuals in quest of objective standards, risk irrelevance to the almost always uncertain circumstances and highly contextualized conditions of human experience" (1999, p. 72).

Anthropologists have the greatest potential to make significant contributions to the field of biomedical ethics in two domains: through studies of the cultural production of scientific and clinical knowledge and its translation into medical technology and healing practices, and, secondly, through analysis of the cultural construction of canons of medical morality, including the clinical practices of bioethics itself. Note that this contribution is not linked to the traditional role of anthropology in elucidating the cultural practices of exotic peoples. Ethnographic approaches to ethical questions help clarify the contextual features that are intrinsic to problematic moral issues that arise in medical and research settings throughout the world (Koenig, 1988, 1997; Hunt; Hogle; Rapp; Marshall and Koenig, 1996, 2001; Kleinman, Fox, and Brandt; Kaufman, 2000; Brodwin, 2000; Finkler; Farmer, 2003).

Anthropology and the Study of Biomedical Technology

A broad range of clinical issues and public health concerns have been addressed by anthropologists, including: end-of-life decision making, definitions of death, human organ and tissue transplantation therapies, disclosure of medical information, informed consent for medical treatment, reproductive technologies, genetic testing and screening, human rights, and treatment of human subjects in biomedical research. Scholars working at the boundary of anthropology and the field of science and technology studies have been central to evolving scholarship. A systematic review of the contributions of anthropologists to bioethics, and to our understanding of the moral dimensions of human suffering more generally, is beyond the scope of this review (see Marshall and Koenig 1996). Instead, several areas in which anthropologists have focused a cultural lens on moral problems in medicine are highlighted.

The development of new medical technologies has raised myriad questions at the intersection of culture, morality, and the production and application of scientific discovery (Lock, Young, and Cambrosio). New technologies in biomedicine challenge established meanings of personhood and provide fertile ground for a socially reimagined human body. Does social personhood begin with a fertilized egg, an embryo, at birth, or once the likely survival of an infant is established? How is life's end understood? Anthropological studies can reveal the ambiguous and contested boundaries between nature and culture, boundaries constantly challenged by scientific developments. Anthropological investigations of new reproductive technologies and genetics, in particular, illustrate how understandings of family are necessarily evolving, radically changing traditional notions of kinship and the cultural and biological creation and "production" of children (Ginsburg and Rapp; Lock; Becker; Finkler).

Rapp's intensive, multiyear ethnographic exploration of the use of amniocentesis for pre-natal diagnosis reveals the moral complexity of a seemingly straightforward technology. Ideally, pregnant women should make fully informed, voluntary decisions about undergoing the procedure and continuing a pregnancy if fetal anomalies are discovered. In the city of New York, where Rapp worked, the experience of testing, and the eventual decisions made, were fundamentally different for women of varying social class and ethnic background. The exercise of choice can only be understood in light of the social meanings attached to pre-natal testing. Rapp warns that a "new eugenics" is unlikely to be imposed by direct state power, but rather will be disguised under a rubric of individual choice.

Similarly, Press and Browner's 1998 study of the use of pre-natal maternal alpha fetoprotein blood testing (used to predict Down syndrome and other anomalies) illustrates the complex and culturally embedded issues surrounding women's refusal or acceptance of the procedure. Many women accepted the test believing it to be a positive way to assure the health of their baby, much like taking vitamins or other elements of routine prenatal care. In actual practice the only way to avoid the birth of an affected fetus is termination of the pregnancy, but U.S. abortion politics preclude a full and open discussion of the issues, leading to severely truncated communication in the clinic and misapprehension of the usefulness of the prenatal blood test.

Press, Fishman, and Koenig demonstrate how cultural context shapes our understanding of the meaning and practice of genetic testing for breast cancer risk, one of the first examples of a genetic test for a common adult-onset disease. Enhancing the decision-making capabilities of individual women is the most commonly suggested bioethical "solution" to the difficult dilemma of disclosing risk for cancer. Cultural analysis suggests two primary reasons for the limitations of this approach: the cultural construction of fear of breast cancer, which has been fueled in part by the predominance of a "risk" paradigm in contemporary bio-medicine. The increasing elaboration and delineation of risk factors and risk numbers are in part intended to help women contend with their fear of breast cancer—fears that are inflamed by constant media attention in the form of health education campaigns. However, because there is no known cure nor foolproof prevention for breast cancer, risk designation brings with it recommendations for vigilant surveillance strategies and screening guidelines. Thus education about risks exacerbates women's fears of breast cancer, confounding decision making about genetic testing. The volatile combination of discourses of fear, risk, and surveillance has significant ethical and social consequences for women and their families.

The conceptual categories underlying our understanding of human identity and difference have been of particular concern to anthropology (Gaines; Lee, Mountain, and Koenig; Brodwin, 2002; Sankar and Cho). Is the species homo sapiens divided into biologically distinct races? With the advent of new knowledge about human genetic variation, as well as individualized therapies targeted to unique genetic signatures, this issue is of growing moral significance. Given profound health disparities across populations, how are we to tease out the interactions among culture, ethnicity, and most importantly, of race, in health research and clinical care? Ethnographic studies of the conduct of genetic research reveal how social categories of race inform all domains of biomedical practice. Locating disease etiology in an ethnic group's shared genetic ancestry—potentially excluding consideration of the relevant social determinants of health—may lead to group stigma as well as poor clinical outcomes.

New technologies—whether used for life-extending therapy, such as the mechanical ventilator, or diagnosis of death, such as functional brain imaging—may challenge settled understandings of the boundary between life and death (Lock). Liminal states, such as patients existing in persistent coma, are not "natural" entities, but are in fact created by new social arrangements, in this case long-term care centers dedicated to the management of those in persistent vegetative state (Kaufman, 2000). Bioethical debates about appropriate treatment for those suspended in such liminal states must take account of social forces. Anthropologists have been actively engaged in exploring the moral dimensions of changing definitions of death itself, calling attention to the powerful role that culture plays in shaping beliefs and practices for managing death and dying (Lock and Honde). Perhaps because of its potent emotional valence and symbolic salience, human organ and tissue transplantation has been studied extensively in many parts of the world. The moral questions fundamental to transplantation—whose organs should be replaced, whose may be "harvested," when is a donor "dead enough"—are deeply contingent, varying by beliefs about the location of the soul, the integrity of the physical body and the existence of an afterlife, beliefs which are negotiated within local economies and political arrangements (Lock; Ohnuki-Tierney; Sharp, 1995; Joralemon; Ikels; Hogle; Das; Gordon, E.).

A particular concern of social scientists has been the analysis of organs and their circulation, characterized initially as an elaborate system of nonmonetary gift exchange, glossed as giving the "gift of life." Sociologist Renee Fox, whose work shares many theoretical and methodological assumptions with that of anthropology, pioneered ethnographic work on transplantation. Later analysts have critiqued the status of human organs as a source of working capital for poor laborers in developing countries (Cohen), and have documented how a heart can create links of symbolic kinship between donor families and organ recipients (Sharp, 2001). Ethical quandaries stem from the commoditization of bodies that accompanies the marketing of human organs (Marshall and Daar). Most problematic is the exploitation of vulnerable individuals, especially when flows of organs go from poor nations to wealthy ones (Scheper-Hughes). Of interest is that fact that allowing individuals the right to sell their organs is justified using a neoliberal market language of rights, a discourse in many ways compatible with bioethics arguments that privilege individual choice and control of one's body. Joralemon documents the change in discourse about financial incentives for donation (from both living and cadaveric donors) since the origins of U.S. transplantation, showing the impact of a public relations campaign formulated to minimize public resistance to donation. Bioethics debates, in response to intense pressure to increase organ supply, have tipped from vehement opposition to any financial compensation for organs to a guarded approval (Joralemon).

Anthropological Analyses of Clinical Ethics and Research Ethics Practice

In the arena of end-of-life medical care, anthropological studies illustrate how decisions to forego technological interventions, such as intensive care, are socially negotiated (Slomka; Kaufman, 1998). Ethnographic findings allow a useful comparison with decision-making ideals based on abstract principles, providing a critique of models of care that evaluate the success of outcomes using a metric based solely on the exercise of patient choice. A review of the empirical literature suggests that the bioethics practices governing end-of-life care (a focus on self-determination, advance care planning, and explicit decisions to forgo life-sustaining treatment) are based on problematic and erroneous assumptions (Drought and Koenig). Studies of bioethics practices applied in culturally diverse clinical settings further illustrate the failure of efforts to enforce universal solutions on complex clinical problems. To fully engage with and respect a patient as a person, what is required is a nuanced understanding of each social environment (Frank et al.; Crawley et al.; Long, 2000; Koenig and Gates-Williams; Koenig and Davies). Anthropologists have also explored the ethical domain of truth-telling, demonstrating the significant impact of cultural difference on beliefs about disclosure of medical information, especially information relevant to diagnosis and prognosis of cancer and other life-threatening illness (Muller and Desmond; Gordon and Paci; Gordon and Daugherty; Orona, Koenig, Davis; Carrese and Rhodes; Kaufert; Long, 1999). Who decides which facts are truthful, whether that truth harms or helps, and who controls disclo-sure, are all culturally patterned.

Ethics consultation is a common and highly visible clinical application of bioethics. These services, common in U.S. hospitals, are carried out either by an expert consultant, an interdisciplinary ethics committee, or some combination of the two approaches; the goal is assistance with the identification of ethical quandaries and their resolution through bioethical analysis. Anthropological study of the actual practice of ethics consultation reveals the difficulty of simply "applying" bioethics theories in the clinic. A range of issues has been studied, including the nature of clinical disputes that are considered "ethical." In fact, consult requests often stem from non-ethical concerns, such as communication failure resulting from the social dynamics of complex hospital environments like intensive care units. Research has also examined actual decision-making processes by institutional ethics committees, power structures within organizational settings and their influence on consultation outcomes, and the potential for conflicts of interests when ethics consultants are institutional employees (Crigger; Orr et al.; Kelly et al.; Marshall, 2001a).

Voluntary informed consent is considered a universal ethical requirement for good clinical practice and for research with human subjects. However, anthropological studies reveal the ways in which the ideals of informed consent may be constrained in actual practice. The objectives of consent may be undermined by too great a reliance on a narrow conception of the exercise of personal autonomy—one excluding social relationships, by focus on consent as the articulation of a "legal" contract, rather than an ongoing process of communication, and by lack of attention to disparities in knowledge and power between professionals and lay people (Kaufert and O'Neill; Barnes et al.). Sankar demonstrates the critical value of classic observational methods by examining the actual practice of informed consent to research participation. Her analysis reveals how the informed consent process shares many characteristics with ritual; actual reflection and active decision making are not part of the dynamic. Rather, research participants offered informed consent had already made up their minds to participate in the study Sankar observed; going through the process of "consenting" the subject served primarily to inaugurate their participation in the research.

Cross-Cultural and International Concerns

Medical interactions, including discussions of consent, are mediated by language—and the use of interpreters—and cultural beliefs about health practices, decisional authority, and professional roles (Kaufert and Putsch; Marshall et al., 1998). These interactions are complex in any environment; cross-national research projects present particular challenges. Marshall (2001b) describes the profound influence of cultural context on informed consent to genetic epidemiological studies conducted in urban and rural settings in Nigeria. Her ethnographic work highlights the challenges of translating difficult scientific concepts in cross-cultural settings; the very idea of consent may be unknown in rural settings where participants are not literate and have little experience of research. Ideal notions of individual consent, as practiced in the United States or other resource rich countries, do not easily incorporate the significance of family and community relationships for the process of obtaining consent in diverse social environments across the world. In their work on community involvement in genetic research, Sharp and Foster outline potential strategies for representing the views of the larger community, suggesting that this may be an important component of the overall process of seeking and obtaining consent. Community consultation does not over-ride an individual subject's right to decline or accept participation, and may serve to make individual consent more authentic. When working with international research teams, the role of the anthropologist is not simply to facilitate a particular study through in-depth knowledge of the local community, but rather to tailor the broad objectives of informed consent to fit local needs.

Issues of social justice in healthcare across the world—until recently neglected in traditional bioethics debates focused on individual choice and the dilemmas created by new technologies in resource-rich countries—are being addressed by anthropologists, particularly those working in the arena of public health (Levin and Fleischman). Anthropologists working in bioethics are deeply concerned about global health disparities, including class-based inequities in the United States (Levin and Schiller). Farmer (2003) levels a harsh critique against the narrow focus of bioethics, arguing strongly for greater attention to structural inequities that maintain health disparities in many areas of the world. The need for broadening the boundaries of bioethics beyond the confines of Western medicine and its limited attention to the political economy of social suffering is increasingly recognized by anthropologists engaged in discussions of global medical morality (Kleinman, Das, and Lock; Farmer, 1997; Kleinman, Fox, and Brandt; Das). Ethnography, which unifies the work of anthropologists, is more than a methodological orientation allowing fine-grained attention to local social and cultural processes. Rather, its theoretical foundation requires that the ethnographer draw connections between local suffering and global social and political processes.

Culture, Morality, and the Problem of Relativism

The landscape of bioethics—in particular the "bedside" practices of clinical ethics and research procedures—is informed by the intellectual and ideological orientations of the analytic philosophers who were key figures in shaping the development of the field. Much work in bioethics reinforces and sustains an Enlightenment preoccupation with the primacy of the individual, "rational" man. Although theoretically it need not, the field's emphasis on rational decision making and individual autonomy often diminishes the importance of the social realm in ethical analysis. Culture, like emotion, may be viewed as something tangential to the core human, something that might be stripped away to reveal a rational "universal" being underneath. And many bioethics procedures seem designed with that rational man in mind. Once practices such as advance care planning or informed consent are enshrined in law and regulation, it becomes increasingly difficult to tailor those procedures to fit local conditions, even though exactly that sort of tailoring may be required to fully observe an ethical principle such as respect for persons. This silencing of culture is confusing to most anthropologists, while the anthropologists' "failure" to appreciate the preeminence of universal ethical norms may lead philosophers to the false conclusion that all anthropologists are naïve relativists.

Identifying, defining, and evaluating the nature of morality has been difficult to achieve as a common area of inquiry for bioethicists and anthropologists. While there is general agreement among the disciplines that the forms and practices of morality are inherently social, the consensus ends there. As Hoffmaster observes, "According to the prevailing positivist approach in Anglo-American philosophy, morality consists of rules and principles, which because they are normative, can be articulated and defended only on the basis of rational arguments directed at what ought to be the case" (1990, p. 242). The potential for a meaningful dialogue with anthropologists and other empirical social scientists—who, according to the tenants of moral philosophy, work only at the level of "descriptive" ethics—is thwarted given the normative and metaethical focus of moral philosophy.

Anthropologists and philosophers have approached morality and cultural pluralism from two very distinct perspectives. The unique morality expressed in diverse cultural traditions is emphasized in the "cultural relativism" of anthropology. Thus, for anthropologists, morality is viewed as an entity, like other dimensions of culture, that can be empirically described (Geertz, 1989; Hatch). It is found in social space, not argued in textbooks. Anthropologists have engaged in prolonged debates about the theoretical and methodological utility of relativism as it relates to cultural context (Herskovits; Hatch; Fabrega; Spiro; Renteln; Shweder).

Indeed, relativism has been foundational in the development of anthropology. The claims of a "moderate" descriptive relativism might be stated as follows: "Because all standards are culturally constituted, there are no available transcultural standards by which different cultures might be judged on a scale of merit or worth" (Spiro, p. 260). Thus, the only normative judgment that might be possible is one that recognizes the equal worth of moral standards (and this holds for total cultures, single cultural systems such as religion, and specific cultural propositions). A normative claim based on this view is that because universally acceptable evaluative standards do not exist, judgments about cognition, behavior patterns, and emotions of different social groups must be relative to the variable standards of the cultures that produce them (e.g., all logic is ethno-logic or socio-logic). Epistemological relativism, the strongest form of descriptive relativism, is distinguished by its emphasis on the particularist theory of cultural determinism, which holds that because cultures are radically different from each other, each culture produces a unique and culturally particular set of human characteristics (Rosaldo). Epistemological relativism implies the basic incommensurability of moral standards across cultures since panhuman generalizations concerning culture are likely to be untrue; generalizations can only be true if confined to a specific group (Geertz, 1973).

The suggestion that it may be impossible to evaluate a moral system because it will always be relative to specific social traditions and historical contingencies is very problematic for many philosophers and bioethicists (Po-Wah, 2002). From the philosopher's vantage point, the sacredness and primacy of the moral sphere may be threatened by empirical descriptions of cultural variation regarding moral practices. At the heart of this debate is the presumed dichotomy of fact and value. As philosophers have asked: How can an empirical description of what "is" influence the formulation of statements about what "ought" to be? In Against Relativism, Macklin expresses the dominant position within Anglo-American philosophy:

There is no denying that different cultures and historical eras exhibit a variety of moral beliefs and practices. The empirical facts revealed by anthropological research yield the descriptive thesis known as cultural relativity. But even if we grant that cultural relativity is an accurate description of the world's diversity, whether anything follows for normative ethics is an entirely different 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? (1999, p. 4)

Macklin's (1998; 1999) argument for a strong version of anti-relativism is based upon her adherence to the idea that certain ethical principles are applicable cross-culturally. Macklin does allow that some bioethical practices might need to be compromised in culturally diverse settings. In traditional Navajo society words have enormous symbolic power; thus speaking openly about a poor prognosis is thought to actually bring on death, causing enormous difficulty for clinicians taught to disclose the truth while engaging in advance care planning or explaining the risks of clinical research (Carrese and Rhodes). In her consideration of a clinical compromise about how much information to disclose, a compromise designed to respect Navajo beliefs about the avoidance of discussing negative topics, Macklin (1999, p. 264) 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." Although she acknowledges that in some cases it is appropriate to consider cultural difference in the application of ethical standards, Macklin justifies this not by recognizing that morality is culturally embedded, but instead, by noting that "flexibility" (in applying ethical rules) is "consistent with adherence to more fundamental ethical principles" (1999, p. 264).

A fear of unbridled relativism may underlie the deep seated ambivalence some bioethicists express when weighing the impact of cultural difference on beliefs about the moral. Rorty speaks directly to this concern, "Critics of moral relativism think that unless there is something absolute, something which shares God's implacable refusal to yield to human weakness, we have no reason to go on resisting evil"(p. xxxi).

The cultural relativism practiced by most anthropologists, however, is first and foremost a methodological position, a claim that each culture must be approached and judged initially on its own terms. The anthropologist makes every effort not to prejudge practices that are unfamiliar. Note that this methodological stance does not preclude eventual evaluation and judgment.

Relativism, Social Justice, and Human Rights

There is an inherent tension between the universalizing discourse of bioethics and the historical celebration of cultural relativism among anthropologists. These two approaches to understanding moral practices in relation to social justice and human rights appear to be antithetical, at least in their most extreme formulations. However, in recent years, scholars in anthropology and bioethics have begun to explore, once again, the possibility of identifying transcultural or universal dimensions of the social behaviors of human groups. For example, in his attempt to develop a qualified version of ethical relativism, Shweder identifies aspects of moral behavior that are universal and culturally prescribed. Profound differences may exist between the moral codes of different people, but according to Shweder, there is more than one moral code that can be rationally defended. Universal dimensions of morality—justice and fairness, for example—are relatively expressed through discretionary variables such as who is designated as the moral agent, or what behavior and beliefs are judged to be morally relevant.

Renteln characterizes relativism as a metaethical theory about the nature of moral perceptions. Renteln suggests that relativism is compatible with cross-cultural universals, which could indicate support for particular human rights. It is precisely in the arena of human rights that anthropologists and bioethicists share a common concern for fundamental abuses inflicted upon individuals and communities. What is especially troubling for proponents of human rights agendas is the reliance on relativism to justify social and political practices that condone and perpetuate the systematic oppression of individuals and groups based on their gender, ethnicity, religion or political affiliation. Macklin's (1999) treatise Against Relativism provides a good example of the philosophical arguments against a strong form of ethical relativism. Macklin repeatedly calls attention to the dangers of moving from empirical claims about cultural variability to moral justifications in the normative sphere. Baker offers a model for negotiating value differences relevant to science and health in a multicultural world. In his discussion of bioethics and notions of the "common good" as a foundation for international human rights, Thomasma brings us closer to a conception of human rights that acknowledges fundamental human values and, simultaneously, the importance of local context and cultural difference.

Anthropologists studying human rights abuses and structural inequalities clearly differentiate between the documentation of cultural patterns and normative judgments about them. Scheper-Hughes's recent work on the global trade in human organs, for example, strongly condemns the organ trade and the dehumanizing practices surrounding it. A culturally informed bioethics must take into account the impact of globalization on social justice, human rights, and public health disparities internationally (Kleinman, Das, and Lock; Das). Anthropologist and physician Paul Farmer, who has addressed a broad range of human rights issues in international health, is especially critical when the "culture argument" is employed to rationalize, excuse or vindicate suffering and structural violence:

Concepts of cultural relativism, and even arguments to reinstate the dignity of different cultures and 'races,' have been easily assimilated by some of the very agencies that perpetuate extreme suffering. Abuses of cultural concepts are particularly insidious in discussions of suffering in general and of human rights more specifically: cultural difference is one of several forms of essentialism used to explain away assaults on dignity and suffering. (1997, p. 278)

In his work combating the HIV epidemic, Farmer has criticized the widely held notion that only AIDS prevention strategies—but not treatment—should be used in resource-poor countries. His successful use of anti-AIDS drugs in Haiti destroyed the rationalization that therapy would not be cost effective in certain cultural groups.

Conclusion: The Role of Anthropology

What, ultimately, will anthropology contribute to the field of bioethics, an increasingly important domain of inquiry in national and international discourses about culture, morality, and health? Whether the question is appropriate care for the dying, the donation and transplantation of human organs, the evaluation of new medical technologies, informed consent in scientific research, or national and international health disparities, the anthropological contribution will be to create carefully researched accounts of how the moral good is located in particular local worlds. Ethnographic methodologies make possible such accounts. Ethnography provides the tools for a robust description of the social dynamics of ordinary moral experience. The application of ethnography in bioethics promises to counter the prevailing policy discourse controlled by economics, decision analysis, and legal procedures, a discourse that often silences social suffering while at the same time providing the illusion of control to individuals (Kleinman, 1999, p. 89).

The paradox of relativism cannot be resolved. Instead, the work of medical anthropologists will enhance our understanding of the moral rendering and interpretation of health practices, scientific discovery, and the various uses and abuses of power in global biomedicine. A single set of universal principles or procedures will be inadequate. Bioethical approaches dominated by a simplistic application of respect for individual autonomy will fail not only in societies with a more nuanced view of the socially embedded nature of personhood, but in the West as well. In healthcare practice and in scientific research, procedures based on respectful negotiation among competing claims—measures informed by moral pragmatism—are most likely to avoid harm and contribute to the common good. Medical anthropologists have a vital role to play in furthering our understanding of the cultural construction of bioethics practices and their applications throughout the world.

barbara koenig

patricia marshall

SEE ALSO: Autonomy; Beneficence; Body; Circumcision; Confidentiality; Death: Anthropological Perspectives; Death, Definition and Determination of; Eugenics and Religious Law; Health and Disease; Human Nature; Informed Consent; Medical Ethics, History of; Mental Health; Mental Illness; Population Ethics

BIBLIOGRAPHY

Baker, Robert. 1998. "A Theory of International Bioethics: The Negotiable and the Non-negotiable." Kennedy Institute of Ethics Journal 8(3): 233–274.

Barnes, Donelle; Davis, Anne J.; Moran, Tracy; et al. 1998. "Informed Consent in a Multicultural Cancer Patient Population: Implications for Nursing Practice." Nursing Ethics 5(5): 412–423.

Becker, Gay. 2000. The Elusive Embryo: How Men and Women Approach New Reproductive Technologies. Berkeley, CA: University of California Press.

Brodwin, Paul. 2002. "Genetics, Identity, and the Anthropology of Essentialism." Anthropological Quarterly 75: 323–330.

Brodwin, Paul, ed. 2000. Biotechnology and Culture: Bodies, Anxieties, Ethics. Bloomington: Indiana University Press.

Carrese, Joseph A., and Rhodes, Lorna A. 1995. "Western Bioethics on the Navajo Reservation." Journal of the American Medical Association 274: 826–829.

Cohen, Lawrence. 1999. "Where it Hurts: Indian Material for an Ethics of Organ Transplantation." Daedalus 128(4): 135–165.

Crawley, LaVera M.; Marshall, Patricia A.; Lo, Bernard; et al. 2002. "Strategies for Culturally Effective End-of-Life Care." Annals of Internal Medicine 136: 673–679.

Crigger, Bette. 1995. "Negotiating the Moral Order: Paradoxes of Ethics Consultation." Kennedy Institute of Ethics Journal 5: 89–112.

Das, Veena. 1999. "Public Good, Ethics, and Everyday Life: Beyond the Boundaries of Bioethics." Daedalus 128: 99–133.

DeVries, Robert, and Subedi, Janardan, eds. 1998. Bioethics and Society: Constructing the Ethical Enterprise. Upper Saddle River, NJ: Prentice Hall.

Drought, Theresa S., and Koenig, Barbara A. 2002. "'Choice' in End-of-Life Decision Making: Researching a Fact or a Fiction?" The Gerontologist 42(Suppl III): 114–128.

Edel, May, and Edel, Abraham. 1968. Anthropology and Ethics: The Quest for Moral Understanding. Cleveland, OH: Press of Case Western Reserve University.

Fabrega, Horatio. 1990. "An Ethnomedical Perspective of Medical Ethics." The Journal of Medicine and Philosophy 15: 593–625.

Farmer, Paul. 1997. "On Suffering and Social Violence: A View from Below." In Social Suffering, ed. Arthur Kleinman, Veena Das, and Margaret Lock. Berkeley: University of California Press.

Farmer, Paul. 2003. Pathologies of Power: Health, Human Rights, and the New War on the Poor. Berkeley: University of California Press.

Finkler, Kaja. 2000. Experiencing the New Genetics: Family and Kinship on the Medical Frontier. Philadelphia: University of Pennsylvania Press.

Fox, Renée C. 1990. "The Evolution of American Bioethics: A Sociological Perspective." In Social Science Perspectives on Medical Ethics, ed. George Weisz. Philadelphia: University of Pennsylvania Press.

Frank, Geyla; Blackhall, Leslie J.; Michel, Vicki, et al. 1998. "A Discourse of Relationships in Bioethics: Patient Autonomy and End-of-Life Decision Making among Elderly Korean Americans." Medical Anthropology Quarterly 12: 403–423.

Gaines, Atwood D. 1998. "Culture and Values at the Intersection of Science and Suffering: Encountering Ethics, Genetics, and Alzheimer Disease." In Genetic Testing for Alzheimer Disease, ed. S. Post and P. Whitehouse. Baltimore: Johns Hopkins University Press.

Geertz, Clifford. 1973. The Interpretation of Cultures. New York: Basic Books.

Geertz, Clifford. 1989. "Anti Anti-Relativism." In Relativism: Interpretation and Confrontation, ed. Michael Krausz. Notre Dame, IN: Notre Dame University Press.

Ginsburg, Faye D., and Rapp, Rayna, eds. 1995. Conceiving the New World Order. Berkeley: University of California Press.

Gordon, Deborah R., and Paci, Eugenio. 1997. "Disclosure Practices and Cultural Narratives: Understanding Concealment and Silence Around Cancer in Tuscany, Italy." Social Science and Medicine 4: 1433–1452.

Gordon, Elisa J. 2001. "They Don't Have to Suffer for Me: Why Dialysis Patients Refuse Offers of Living Donor Kidneys." Medical Anthropology Quarterly 5: 1–22.

Gordon, Elisa J., and Daugherty, Chris. 2003. "'Hitting You Over the Head': Oncologists' Disclosure of Prognosis to Advanced Cancer Patients." Bioethics 17(2): 142–168.

Hatch, Elvin. 1983. Culture and Morality: The Relativity of Values in Anthropology. New York: Columbia University Press.

Herskovits, Melville. 1972. Cultural Relativism: Perspectives in Cultural Pluralism. New York: Random House. Hoffmaster, Barry. 1990. "Morality and the Social Sciences." In Social Science Perspectives on Medical Ethics, ed. George Weisz. Philadelphia: University of Pennsylvania Press.

Hoffmaster, Barry, ed. 2001. Bioethics in Social Context. Philadelphia: Temple University Press.

Hogle, Linda. 1999. Recovering the Nation's Body: Culture Memory, Medicine, and the Politics of Redemption. New Brunswick, NJ: Rutgers University Press.

Hunt, Linda. 1998. "Moral Reasoning and the Meaning of Cancer: Causal Explanations of Oncologists and Patients in Southern Mexico." Medical Anthropology Quarterly 12(3): 298–318.

Ikels, Charlotte. 1997. "Kidney Failure and Transplantation in China." Social Science and Medicine 44: 1271–1283.

Joralemon, Donald. 2001. "Shifting Ethics: Debating the Incentive Question in Organ Transplantation." Journal of Medical Ethics 27: 30–35.

Kaufert, Joseph. 1999. "Cultural Mediation in Cancer Diagnosis and End of Life Decision-Making: The Experience of Aboriginal Patients in Canada." Anthropology and Medicine 6: 405–421.

Kaufert, Joseph M., and O'Neil, John D. 1990. "Biomedical Rituals and Informed Consent: Native Canadians and the Negotiation of Clinical Trust." In Social Science Perspectives on Medical Ethics, ed. George Weisz. Philadelphia, PA: University of Pennsylvania Press.

Kaufert, Joseph M., and Putsch, Robert W. 1997. "Communication through Interpreters in Healthcare: Ethical Dilemmas Arising from Differences in Class, Culture, Language, and Power." Journal of Clinical Ethics 8(1): 71–87.

Kaufman, Sharon R. 1998. "Intensive Care, Old Age, and the Problem of Death in America." The Gerontologist 38(6): 715–725.

Kaufman, Sharon R. 2000. "In the Shadow of 'Death with Dignity': Medicine and Cultural Quandaries of the Vegetative State." American Anthropologist 102(1): 69–83.

Kelly, Susan E.; Marshall, Patricia A.; Sanders, Lee M.; et al. 1997. "Understanding the Practice of Ethics Consultation: Results of an Ethnographic Multi-Site Study." Journal of Clinical Ethics 8:136–149.

Kleinman, Arthur. 1999. "Moral Experience and Ethical Reflection: Can Ethnography Reconcile Them? A Quandary for 'The New Bioethics.'" Daedalus 128(4): 69–97.

Kleinman, Arthur; Das, Veena; and Lock, Margaret. 1997. Social Suffering. Berkeley: University of California Press.

Kleinman, Arthur; Fox, Renee C.; and Brandt, Allan M., guest eds. 1999. Daedalus: Bioethics and Beyond: Volume 128, Number 4. Cambridge, MA: American Academy of Arts and Sciences.

Koenig, Barbara A. 1988. "The Technological Imperative in Medical Practice: The Social Creation of a Routine Treatment." In Biomedicine Examined, ed. Margaret Lock and Deborah R. Gordon. Boston: Kluwer.

Koenig, Barbara A. 1996. "The Power (and Limits) of Proximity." Hastings Center Report 26(6): 30–32.

Koenig, Barbara A. 1997. "Cultural Diversity in Decision-Making about Care at the End-of-Life." In Approaching Death: Improving Care at the End of Life, ed. Marilyn J. Field and Christine K. Cassel. Washington, D.C.: National Academy of Sciences.

Koenig, Barbara A., and Davies, Betty. 2003. "Cultural Dimensions of Care at Life's End for Children and Their Families." In When Children Die: Improving Palliative and End-of-Life Care for Children and their Families, ed. Marilyn J. Field, and Richard E. Behrman. Washington, D.C.: National Academy of Sciences.

Koenig, Barbara, and Gates-Williams, Jan. 1995. "Understanding Cultural Differences in Caring for Dying Patients." Western Journal of Medicine 163: 244–249.

Kundstadter, Peter. 1980. "Medical Ethics in Cross-Cultural and Multi-Cultural Perspective." Social Science and Medicine 14B: 289–296.

Lee, Sandra S. J.; Mountain, Joanna; and Koenig, Barbara A. 2001. "The Meanings of 'Race' in the New Genomics: Implications for Health Disparities Research." Yale Journal of Health Policy, Law, and Ethics 1(1): 33–75.

Levin, Betty W., and Fleischman, Alan R. 2002. "Public Health and Bioethics: The Benefits of Collaboration." American Journal of Public Health. 92: 165–167.

Levin, Betty W., and Schiller, Nina G. 1998. "Social Class and Medical Decision Making: A Neglected Topic in Bioethics." Cambridge Quarterly of Healthcare Ethics 7: 41–56.

Lieban, Richard W. 1990. "Medical Anthropology and the Comparative Study of Medical Ethics." In Social Science Perspectives on Medical Ethics, ed. George Weisz. Philadelphia: University of Pennsylvania Press.

Lock, Margaret. 2002. Twice Dead: Organ Transplants and the Reinvention of Death. Berkeley: University of California Press.

Lock, Margaret, and Honde, Christina. 1990. "Reaching Consensus about Death: Heart Transplants and Cultural Identity in Japan." In Social Science Perspectives on Medical Ethics, ed. George Weisz. Philadelphia: University of Pennsylvania Press.

Lock, Margaret; Young, Alan; and Cambrosio, Alberto, eds. 2000. Living and Working with the New Medical Technologies: Intersections of Inquiry. New York: Cambridge University Press.

Long, Susan O. 1999. "Family Surrogacy and Cancer Disclosure: Physician-Family Negotiation of an Ethical Dilemma in Japan." Journal of Palliative Care 15: 31–42.

Long, Susan O. 2000. "Living Poorly or Dying Well: Decisions About Life Support and Treatment Termination for American and Japanese Patients." Journal of Clinical Ethics 11: 236–250.

Macklin, Ruth. 1998. "Ethical Relativism in a Multicultural Society." Kennedy Institute of Ethics Journal 8:1–22.

Macklin, Ruth. 1999. Against Relativism: Cultural Diversity and the Search for Ethical Universals in Medicine. New York: Oxford University Press.

Marshall, Patricia A. 1992. "Anthropology and Bioethics." Medical Anthropology Quarterly 6: 49–73.

Marshall, Patricia A. 2001a. "A Contextual Approach to Clinical Ethics Consultation." In Bioethics in Social Context, ed. Barry Hoffmaster. Philadelphia: Temple University Press.

Marshall, Patricia A. 2001b. "Informed Consent in International Health Research." In Biomedical Research Ethics: Updating International Guidelines: A Consultation, ed. Robert Levine, Samuel Gorovitz, and John Gallagher. Geneva: Council for International Organization of Medical Sciences, World Health Organization.

Marshall, Patricia A., and Daar, Abdallah. 2000. "Ethical Issues in Human Organ Replacement: A Case Study from India." In Global Health Policy, Local Realities: The Fallacy of the Level Playing Field, ed. Linda M. Whiteford, and Lenore Manderson. Boulder, CO: Lynne Publishers, Inc.

Marshall, Patricia A., and Koenig, Barbara A. 1996. "Anthropology and Bioethics: Perspectives on Culture, Medicine and Morality." In Medical Anthropology: Contemporary Theory and Method, 2nd edition, ed. Carolyn Sargent and Thomas Johnson. Westport, CT: Praeger Publishing Co.

Marshall, Patricia, and Koenig, Barbara A. 2000. "Bioethiques et Anthropologie: Situer le 'Bien' dans la Pratique Medicale [Intersection of Bioethics and Anthropology: Locating the "Good" in Medical Practices]." Anthropologie et Sociétés 24(2): 35–55.

Marshall, Patricia A., and Koenig, Barbara A. 2001. "Ethnographic Methods." In Method in Medical Ethics, ed. Jeremy Sugarman and Daniel Sulmasy. Washington, D.C.: Georgetown University Press.

Marshall, Patricia A.; Koenig, Barbara A.; Grifhorst, Paul; et al. 1998. "Ethical Issues in Immigrant Health Care and Clinical Research." In Handbook of Immigrant Health, ed. Sana Loue. New York: Plenum Press.

Muller, Jessica H. 1994. "Anthropology, Bioethics, and Medicine: A Provocative Trilogy." Medical Anthropology Quarterly 8: 448–467.

Muller, Jessica H., and Desmond, Brian. 1992. "Ethical Dilemmas in a Cross-Cultural Context: A Chinese Example." Western Journal of Medicine 157: 323–327.

O'Neill, Onora. 2002. Autonomy and Trust in Bioethics. Cambridge, Eng.: Cambridge University Press.

Ohnuki-Tierney, Eniko. 1994. "Brain Death and Organ Transplantation." Current Anthropology 35: 233–254.

Orona, Cecelia J.; Koenig, Barbara A.; and Davis, Anne J. 1994. "Cultural Aspects of Nondisclosure." Cambridge Quarterly of Healthcare Ethics 3: 338–346.

Orr, Robert; Marshall, Patricia A.; and Osborn, Jamie. 1995. "Cross-Cultural Considerations in Clinical Ethics Consultations." Archives of Family Medicine 4: 159–164.

Po-Wah, Julia Tao Lai, ed. 2002. Cross-Cultural Perspectives on the (Im)Possibility of Global Bioethics. Dordrecht: Kluwer Academic Publishers. Press, Nancy, and Browner, Carol H. 1998. "Characteristics of Women Who Refuse an Offer of Prenatal Diagnosis: Data from the California Maternal Serum Alpha Fetoprotein Blood Test Experience." American Journal of Medical Genetics 78(5): 433–445.

Press, Nancy; Fishman, Jennifer R.; and Koenig, Barbara A. 2000. "Collective Fear, Individualized Risk: The Social and Cultural Context of Genetic Screening for Breast Cancer." Nursing Ethics 7(3): 237–249.

Rapp, Rayna. 2000. Testing Women, Testing the Fetus: The Social Impact of Amniocentesis in America. New York: Routledge.

Renteln, Alison D. 1988. "Relativism and the Search for Human Rights." American Anthropologist 90: 56–72.

Rorty, Richard. 1999. "Introduction: Relativism: Finding and Making." In Philosophy and Social Hope, ed. Richard Rorty. New York: Penguin.

Rosaldo, Renato. 1989. Culture and Truth: The Remaking of Social Analysis. Boston: Beacon Press.

Sankar, Pamela. 1996. "Informed Consent: (W)rituals of Medical Research." Paper presented at the American Anthropological Association Annual Meeting, San Francisco, CA.

Sankar, Pamela, and Cho, Mildred K. 2002. "Toward a New Vocabulary of Human Genetic Variation." Science 298: 1337–1338.

Scheper-Hughes, Nancy. 2000. "The Global Traffic in Human Organs." Current Anthropology 41: 191–224.

Sharp, Lesley. 1995. "Organ Transplantation as a Transformative Experience: Anthropological Insights into the Restructuring of the Self." Medical Anthropological Quarterly 9: 357–389.

Sharp, Lesley. 2001. "Commodified Kin: Death, Mourning, and Competing Claims on the Bodies of Organ Donors in the United States." American Anthropologist 103: 112–133.

Sharp, Richard, and Foster, Morris. 2000. "Study Populations in the Review of Genetic Research." Journal of Law, Medicine and Ethics 28: 41–51.

Shweder, Richard A. 1990. "Ethical Relativism: Is There a Defensible Version?" Ethos 18(2): 205–218.

Slomka, Jacqueline. 1992. "The Negotiation of Death: Clinical Decision Making at the End of Life." Social Science and Medicine 35(3): 251–259.

Spiro, Melford E. 1986. "Cultural Relativism and the Future of Anthropology." Cultural Anthropology 1: 259–286.

Thomasma, David C. 1997. "Bioethics and International Human Rights." Journal of Law, Medicine and Ethics 25: 295–306.

Weisz, George. 1990. Social Science Perspectives on Medical Ethics. Philadelphia: University of Pennsylvania Press.

INTERNET RESOURCE

Koenig, Barbara A., and Davies, Betty. 2003. "Cultural Dimensions of Care at Life's End for Children and Their Families." In When Children Die: Improving Palliative and End-of-Life Care for Children and their Families, ed. Marilyn J. Field, and Richard E. Behrman. Washington, D.C.: National Academy of Sciences. Available from <http://books.nap.edu/html/children_die/AppD.pdf>.

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