Anthropology Bioethics
by
Mara Buchbinder
  • LAST MODIFIED: 25 September 2019
  • DOI: 10.1093/obo/9780199766567-0221

Introduction

The discipline of bioethics emerged in the United States in the 1960s as a response to several prominent controversies in medical research and practice, including the aftermath of the Tuskegee syphilis experiments and the development of kidney dialysis and associated concerns about resource allocation. Anthropology and bioethics have had a contentious relationship since the field’s inception. Anthropologists have viewed bioethics as ethnocentric, universalizing, and inattentive to the social, cultural, and political contexts of bioethical dilemmas. Anthropologists have challenged foundational bioethical concepts such as autonomy, showing that decision making, in many cases, unfolds in a relational context that is poorly matched to individualized models of informed consent, which lodge decisional authority within a single autonomous patient or research subject. At the same time, anthropology has much to offer the discipline of bioethics. Empirical data can help to address or resolve normative questions, bring unrecognized factors to light, and open up new avenues for further exploration. Anthropology’s characteristic use of cases grounds bioethical debates in contextual details that may change the stakes of discussion. And anthropology can enrich bioethics scholarship with its use of ethnography and social theory to illuminate power structures and relations of inequality, its characteristic dual focus on the micro and the macro, and its capacity for reflexivity. In exchange, bioethics may beckon anthropologists to go outside their comfort zone and develop prescriptive solutions to ethical challenges. On the other hand, debate is ongoing about whether anthropologists should revitalize bioethics and infuse it with more attention to cultural and historical contexts, or, instead, leave bioethics behind entirely and develop their own ethical projects. Moving forward, it may be useful to distinguish between anthropology in bioethics and anthropology of bioethics. The former category of research and scholarship encompasses anthropological studies of bioethically relevant topics, such as end-of-life decision making, organ transplantation, genetic screening, stem cell research, and the globalization of clinical trials. Anthropology of bioethics performs a critical analysis of bioethics as a sphere of knowledge production and professional expertise. This approach acknowledges that bioethics, as an ideology and a practice, may best serve certain kinds of social actors and obscure its limits for other actors and conditions. While these two approaches are by no means mutually exclusive, they can help to structure an understanding of anthropology’s potential contributions to the field.

The Anthropological Critique of Bioethics: Foundational Texts

The anthropological critique of bioethics suggests that bioethics relies too heavily on universal principles and fails to account for the ways in which moral reasoning is shaped by cultural values and locally situated practices. Anthropologists have challenged Tom Beauchamp and James Childress’s influential framework, which holds that four principles—autonomy, beneficence, non-maleficence, and justice—provide a foundation for bioethical reasoning. From Beauchamp and Childress’s perspective, applying these principles to particular circumstances will result in ethical decisions. For anthropologists and likeminded social scientists, however, this approach is ethnocentric, reductionist, and decontextualized. In arguing for attention to the contingent and locally situated nature of moral decision making, many anthropologists rely on a distinction first posed in Kleinman 1995 between ethics, as a codified body of norms and principles, and morals, contextual understandings of what is at stake in everyday experience. Fox and Swazey 1984 draws on research in China to highlight the value of a comparative ethnographic perspective for illuminating the ethnocentric assumptions that shape bioethical decision making. The authors suggest that professional bioethics in the United States overemphasizes individualism and reflects a shallow view of American values. Sargent and Smith-Morris 2006 challenges Beauchamp and Childress’s presumption of a common morality shared by “all serious people.” Myser 2003 argues that the field of US bioethics has failed to recognize its own dominant whiteness as an analytic weakness. Das 1999 draws attention to the inadequacies of dominant bioethics frameworks in non-Western, low-income countries. Muller 1994 suggests that bioethics, as a sphere of professional knowledge, ought to be treated as an object of cultural investigation in its own right. A tension between critiquing the field of bioethics and highlighting the potential for generative anthropological contributions runs throughout these accounts. Even at the time of its publication, Marshall 1992 acknowledged “winds of change” emerging in mainstream bioethics with respect to the central role of individualism and noted promising directions for future contributions, many of which have been borne out in the intervening years. Brodwin 2008 later picked up on this theme in encouraging anthropologists to adopt a more constructive stance toward engaging with bioethics. Fassin 2008 offers one model for such an approach with its clinical ethnography of a South African hospital, which identified “elementary forms of care” grounded in everyday care practices.

  • Brodwin, Paul. 2008. The coproduction of moral discourse in US community psychiatry. Medical Anthropology Quarterly 22.2: 127–147.

    DOI: 10.1111/j.1548-1387.2008.00011.xSave Citation »Export Citation »E-mail Citation »

    After summarizing the social scientific critique of bioethics, Brodwin suggests that this critique threatens to impede anthropological contributions to bioethical inquiry because it challenges bioethicists’ authority. He urges anthropologists to move beyond a critical stance and explore, instead, the coproduction of moral discourse by formal bioethics and everyday clinical practice. This argument is illustrated with examples from his ethnography of frontline psychiatric case management on the negotiation of confidentiality.

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    • Das, Veena. 1999. Public good, ethics, and everyday life: Beyond the boundaries of bioethics. Daedalus 128.4: 99–134.

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      This article suggests that work in bioethics in low-income countries has primarily focused on translating key concepts, such as autonomy, for use in these underresourced settings. Using the case of smallpox eradication in India, Das proposes instead an exploration of the concept of health as a public good, which draws attention to issues of equity and justice.

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      • Fassin, Didier. 2008. The elementary forms of care: An empirical approach to ethics in a South African hospital. Social Science & Medicine 67.2: 262–270.

        DOI: 10.1016/j.socscimed.2008.03.044Save Citation »Export Citation »E-mail Citation »

        While bioethics tends to apply universal principles to empirical cases, this article proposes to reverse the analytic process and extrapolate ethical precepts from grounded observations of everyday practice. Using ethnographic observations of nursing practices in a South African hospital, Fassin identifies a set of “elementary forms of care” that form the basis for a practice-based nursing ethics.

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        • Fox, Renee C., and Judith P. Swazey. 1984. Medical morality is not bioethics—medical ethics in China and the United States. Perspectives in Biology and Medicine 27.3: 336–360.

          DOI: 10.1353/pbm.1984.0060Save Citation »Export Citation »E-mail Citation »

          The authors suggest that an examination of Chinese medical morality can challenge the ethnocentric and universalizing assumptions of American bioethics. They draw on ethnographic research in China to show that medical ethics is tied to social and cultural values. While the authors are sociologists, the article serves as a key touchstone for anthropology and bioethics because it was the first to propose a culturally relative view of professional bioethics.

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          • Kleinman, Arthur. 1995. Anthropology of bioethics. In Writing at the margins: Discourse between anthropology and medicine. Edited by Arthur Kleinman, 41–67. Berkeley: Univ. of California Press.

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            Kleinman argues that bioethics, like biomedicine, is ethnocentric in its privileging of individual rights and its presumption of an isolated, autonomous self. He also critiques the focus in bioethics on high-stakes encounters in hospital settings, arguing instead that most moral dilemmas emerge in more ordinary settings of family-based care. Kleinman proposes that an anthropological turn can ground bioethical inquiry in interpersonal experience and local moral worlds.

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            • Marshall, Patricia. 1992. Anthropology and bioethics. Medical Anthropology Quarterly 6.1: 49–73.

              DOI: 10.1525/maq.1992.6.1.02a00040Save Citation »Export Citation »E-mail Citation »

              Marshall reviews the history of the field of bioethics in the United States, considers why anthropologists have not historically been involved in the field, describes current contributions to bioethics, and offers promising directions for future research. In closing, she suggests that anthropologists can extend the scope of bioethical inquiry by drawing attention to cross-cultural variation in bioethical practice, and to the cultural underpinnings of ethical concepts.

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              • Muller, Jessica. 1994. Anthropology, bioethics, medicine: A provocative trilogy. Medical Anthropology Quarterly 8.4: 448–467.

                DOI: 10.1525/maq.1994.8.4.02a00070Save Citation »Export Citation »E-mail Citation »

                After a review of the history of bioethics and dominant theoretical frameworks, Muller examines four dimensions of an anthropological approach to bioethics: (1) the contextual nature of bioethical dilemmas, (2) the cultural embeddedness of moral systems, (3) the multicultural character of bioethical problems, and (4) an examination of bioethics as a cultural phenomenon. She suggests that anthropologists can contribute to ongoing theoretical debates in bioethics, such as the role of relativism in moral reasoning.

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                • Myser, Catherine. 2003. Differences from somewhere: The normativity of whiteness in bioethics in the United States. American Journal of Bioethics 3.2: 1–11.

                  DOI: 10.1162/152651603766436072Save Citation »Export Citation »E-mail Citation »

                  Myser argues that mainstream bioethics in the United States has failed to acknowledge the normativity of whiteness, as a form of social positioning, in its approach and foundational assumptions. This oversight risks reinscribing white privilege into the field’s theories and methods. She argues for more reflexive attention to race and the invisibility of white dominance within the field.

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                  • Sargent, Carolyn, and Carolyn Smith-Morris. 2006. Questioning our principles: Anthropological contributions to ethical dilemmas in clinical practice. Cambridge Quarterly of Healthcare Ethics 15.2: 123–134.

                    DOI: 10.1017/S0963180106060154Save Citation »Export Citation »E-mail Citation »

                    The authors use clinical cases as a foundation to critique two dominant assumptions: the presumption of an autonomous individual as the unit and focus of care and the notion of a common morality. They outline factors relevant to an anthropological approach to bioethics and recommend the exploration of moral issues at the initial presentation for care, using Kleinman’s explanatory-models approach. (See the Oxford Bibliographies in Anthropology article “Medical Anthropology.”)

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                    Bioethics in Global Perspective

                    Contemporary bioethics originated in the United States, yet its foundational theories, methods, and principles have increasingly been exported to other countries for research and clinical purposes. Anthropologists have been concerned with the failure of bioethics to address problems such as the uneven uptake of biotechnologies in an increasingly stratified world and the practical implications of translating bioethics across the globe. Conventional bioethics practices may conflict with local traditions, values, and beliefs, and tensions can emerge between protecting human rights and respecting cultural difference. How bioethics deals with cultural pluralism has been the subject of considerable debate and critical reflection by anthropologists, including those whose work is highlighted in this section. The authors uniformly acknowledge the limits of Western bioethics in non-Western settings and advocate for bioethics to pay more attention to culture and global context. However, Marshall and Koenig 2004 warns against bioethicists adopting essentialized notions of culture. Many of the selected resources utilize a case-based approach to demonstrate the limits of Western bioethical frames for non-Western settings. Myser 2011 offers the first comprehensive, comparative account of bioethics in global perspective, compiling ethnographic cases from every inhabited continent. Hamdy 2013 pushes us to think beyond the limits of cultural relativism for bioethics practice. What is most at stake for Egyptian physicians is not their Islamic worldview and its relationship to bioethical dilemmas surrounding organ transplantation; rather, it is the structural constraints on the Egyptian health-care system. Simpson 2018 similarly shows how the author’s plan to study autonomy in India from a comparative bioethical perspective was foiled by the overshadowing concerns of resource scarcity. Stonington and Ratanakul 2006 uses the case of mechanical ventilation in Thailand to propose that all countries ought to develop contextually grounded bioethical systems that derive from local values and concepts. See also Petryna 2009 (cited under Ethics in Biomedical Research).

                    • Hamdy, Sherine. 2013. Not quite dead: Why Egyptian doctors refuse the diagnosis of death by neurological criteria. Theoretical Medicine and Bioethics 34.2: 147–160.

                      DOI: 10.1007/s11017-013-9245-5Save Citation »Export Citation »E-mail Citation »

                      Drawing on long-term ethnographic research on organ transplantation in Egypt, Hamdy rejects the notion of an “Islamic” bioethics. Instead, she identifies certain parallels between Egyptian physicians’ unease with cadaveric organ donation and Western bioethical debates. She suggests that a preoccupation with how religious beliefs can impede bioethical principles can divert attention from more fundamental ethical questions regarding justice, equity, and health-care access in resource-constrained environments.

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                      • Marshall, Patricia, and Barbara Koenig. 2004. Accounting for culture in a globalized bioethics. Journal of Law, Medicine, & Ethics 32.2: 252–266.

                        DOI: 10.1111/j.1748-720X.2004.tb00472.xSave Citation »Export Citation »E-mail Citation »

                        The authors consider the question of whether there can be a universal, global bioethics, and, if so, how it can account for cultural difference. After reviewing how mainstream philosophical bioethicists have addressed issues of cultural difference, they outline a vision for a culturally informed and globally aware bioethics. They argue, in particular, that bioethics must attend to human rights and social justice, as well as consider social context.

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                        • Myser, Catherine, ed. 2011. Bioethics around the globe. Oxford: Oxford Univ. Press.

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                          This edited volume brings together contributors from anthropology and related fields to develop a critical, reflexive, and comparative account of bioethics in a diverse group of countries. Contributions use empirical cases to consider how the transportation of bioethics outside of the United States has transformed the field as it encounters and adapts to local settings.

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                          • Simpson, Bob. 2018. Global bioethics: A story of dreams and doubts from Bengal. Perspectives in Biology and Medicine 61.2: 215–229.

                            DOI: 10.1353/pbm.2018.0038Save Citation »Export Citation »E-mail Citation »

                            This essay addresses the question of how to reconcile the universal value systems of bioethics with cultural diversity, particularly in settings of socioeconomic scarcity. Simpson foregrounds a biographical narrative about a medical educator and bioethics practitioner in India to illustrate how concerns for bioethical principles like autonomy may ultimately fall short in light of more pressing concerns about inequality, social injustice, and corruption in Indian medical practice.

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                            • Stonington, Scott, and Pinit Ratanakul. 2006. Is there a global bioethics? End-of-life in Thailand and the case for local difference. PLoS Medicine 3.10: e439.

                              DOI: 10.1371/journal.pmed.0030439Save Citation »Export Citation »E-mail Citation »

                              The authors argue that Western bioethics is insufficient to address bioethical problems that emerge in non-Western settings. They show how a Western bioethical approach fails to address key ethical tensions in an ethnographic case regarding mechanical ventilation in Thailand. Instead, they propose several elements that might comprise a Thai bioethics, including the duty to relieve suffering and the Buddhist principles of karma, compassion, and interdependence.

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                              Journals

                              Anthropological research on bioethics has been published primarily in medical anthropology journals and in related interdisciplinary journals. Medical Anthropology Quarterly is the flagship journal of the Society for Medical Anthropology, a section of the American Anthropology Association. Medical Anthropology: Cross-Cultural Studies in Health and Illness and Anthropology & Medicine are longstanding journals committed to publishing broad works in medical anthropology. Medical Anthropology Theory is a newer, open-access journal aimed at engaging a wider international audience and decentering the work of US scholars. Social Science & Medicine is an interdisciplinary journal in the health social sciences that publishes high-caliber, methodologically rigorous social science research. American Journal of Bioethics Empirical Bioethics is an interdisciplinary bioethics journal focusing on reporting results from empirical bioethics research. Somatosphere is an innovative website publishing on a variety of topics in medical anthropology and science studies in experimental formats.

                              • American Journal of Bioethics Empirical Bioethics. 2014–.

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                                This peer-reviewed journal, formerly known as AJOB Primary Research (2010–2013), publishes empirical research in bioethics undertaken using a variety of methods, including anthropological methods such as qualitative interviews or ethnography. AJOB Empirical Bioethics construes empirical bioethics to include social scientific research applied to bioethical questions and topics.

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                                • Anthropology & Medicine. 1994–.

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                                  This peer-reviewed journal publishes original papers, reviews, commentaries, and debates in medical anthropology for an international readership. The journal aims to stimulate debate about critical issues at the intersections of culture, health, and medicine. In addition to publishing reviews of contemporary books, a series of articles called “The Canon” features critical reappraisals of classical texts in the field.

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                                  • Medical Anthropology: Cross-Cultural Studies in Health and Illness. 1977–.

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                                    This peer-reviewed journal publishes scholarly articles and editorials on a wide range of topics in medical anthropology and related fields. Articles published in the journal highlight the theoretical sophistication and ethnographic richness of contemporary medical anthropology.

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                                    • Medical Anthropology Quarterly: International Journal for the Analysis of Health. 1987–.

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                                      This peer-reviewed journal publishes conceptual and empirical research articles, occasional review articles, and book reviews in all areas of medical anthropology. Its goal is to stimulate the development of theory, methods, and debate in medical anthropology and to explore the links among medical anthropology, the broader field of anthropology, and neighboring fields in the humanities, social sciences, and health-related disciplines.

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                                      • Medical Anthropology Theory. 2014–.

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                                        This peer-reviewed, open-access journal publishes scholarly articles, essays, reviews, and reports related to medical anthropology, science and technology studies, and critical global health studies. It aims to foreground the work of non-American scholars, engage applied anthropologists in theoretical and political debate, and rethink classical anthropological theory in light of contemporary ethnographic scholarship on biomedical and health issues.

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                                        • Social Science & Medicine. 1967–.

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                                          This peer-reviewed interdisciplinary international journal publishes original research articles, both empirical and theoretical, short reports, reviews, and commentaries in the broad area of social science and health. Articles originate from a wide range of social science disciplines, including anthropology, sociology, economics, epidemiology, geography, health policy, and psychology.

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                                          • Somatosphere: Science, Medicine, and Anthropology. 2008–.

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                                            This collaborative website publishes material on the intersections of medical anthropology, science and technology studies, cultural psychiatry, psychology, and bioethics. It aims to generate critical questions, debate, and discussion about contemporary and historical matters relevant to medical anthropology and related fields. Contributions include essays, research reports, book and film reviews, event reports, photo essays, perspectives on teaching medical anthropology, and other innovative forums.

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                                            End of Life

                                            Much bioethics scholarship has focused on ethical dilemmas that center on death and care for the dying. Anthropologists have contributed to such work in several important ways. First, they have conducted research on death and dying across the globe, demonstrating that practices of care for the dying and local understandings of the category of death itself are culturally and historically shaped. Consequently, concepts and practices taken for granted in one place may look very different in another. Lock 2002 offers a comparative account of the emergence of the brain death construct, highlighting the different terms and contours of debate in North America and Japan. Stonington 2012 shows how in Thailand, the ethics of end-of-life decision making confer an important role to the location in which death occurs. Second, anthropologists have challenged many of the unchecked assumptions in bioethics regarding which principles guide, or should guide, end-of-life care and end-of-life decision making in the West. Much of the anthropological literature in this area complicates the notions of autonomy, choice, and decision making that underlie bioethical precepts. Drought and Koenig 2002 is a critical analysis of the paradigms of individual choice and autonomy that pervade bioethical frameworks for end-of-life decision making. (See also Buchbinder 2018 and Gandsman 2018, both cited under Medical Aid-in-Dying.) Kaufman 2015 highlights the role of macro-structural forces in shaping what constitutes an ethical choice regarding life-prolonging treatment. Chapple 2010 describes how death presents a bureaucratic and social problem for hospitals insofar as it conflicts with the ideology of rescue that justifies their existence. (See also Glaser and Strauss 2017, cited under Prognosis, Secrecy, and Disclosure.) Pols, et al. 2018 shows how Dutch clinicians engage with dignity as a relational practice in end-of-life care, rather than an abstract value to achieve. Finally, this section also features three compilations on the anthropology of the end of life. The selections in Das and Han 2016 attempt to move beyond a Foucauldian lens in addressing the ethics and politics of life and death. Robben 2018 covers a broad range of topics related to the anthropology of death and dying and incorporates cultural, political, and biomedical perspectives. Kaufman and Morgan 2005 provides a critical appraisal of anthropological work on the beginnings and ends of life and explores relationships and affiliations between these liminal periods of life.

                                            • Chapple, Helen. 2010. No place for dying: Hospitals and the ideology of rescue. Walnut Creek, CA: Left Coast.

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                                              This book-length ethnography of hospital death, by an anthropologist and bioethicist with a background in clinical nursing, explores the mandate to rescue lives that animates contemporary American hospitals. The book describes the social organization of hospital deaths and illustrates how, why, and with what effects death presents a management problem for hospital staff.

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                                              • Das, Veena, and Clara Han, eds. 2016. Living and dying in the contemporary world: A compendium. Oakland: Univ. of California Press.

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                                                This edited volume presents a selection of anthropology work that engages issues of life and death from a fresh theoretical perspective, moving beyond a Foucauldian biopolitics. The book contains forty-four chapters divided into five sections: (1) natality, sexuality, and reproduction; (2) medical, legal, and pharmaceutical spaces; (3) healing: religious and secular bodies; (4) precarious lives; and (5) death and dying.

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                                                • Drought, Theresa, and Barbara Koenig. 2002. “Choice” in end-of-life decision making: Researching fact or fiction. The Gerontologist 42.3: 114–128.

                                                  DOI: 10.1093/geront/42.suppl_3.114Save Citation »Export Citation »E-mail Citation »

                                                  The authors critically examine the commitment of bioethics to patient choice at the end of life. They argue that the discourse on choice presupposes a patient who is actively engaged in her care and who has recognized and accepted death well in advance of its arrival. This model of the patient may be unrealistic for patients from certain socioeconomic and racial/ethnic backgrounds. Moreover, patients may privilege other competing values above autonomy and individual choice.

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                                                  • Kaufman, Sharon, and Lynn Morgan. 2005. The anthropology of the beginnings and ends of life. Annual Review of Anthropology 34: 317–341.

                                                    DOI: 10.1146/annurev.anthro.34.081804.120452Save Citation »Export Citation »E-mail Citation »

                                                    This review essay provides a critical overview of anthropological scholarship on the beginnings and ends of life. It explores, among other topics, the distinctions between social and biological death, the biopolitical management of life and death, and ethical dilemmas created by increasing opportunities to control death through medical intervention.

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                                                    • Kaufman, Sharon. 2015. Ordinary medicine: Extraordinary treatments, longer lives, and where to draw the line. Durham, NC: Duke Univ. Press.

                                                      DOI: 10.1215/9780822375500Save Citation »Export Citation »E-mail Citation »

                                                      Reporting on decades-long research, Kaufman examines the changing character of longevity in an aging society. She shows how treatments once considered extraordinary have become routinized through a constellation of social, economic, and policy drivers. This process has transferred much of the burden of end-of-life decision making from professional bioethics to patients and their families, who are increasingly confronted with profound ethical decisions about how much treatment is too much.

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                                                      • Lock, Margaret. 2002. Twice dead: Organ transplants and the reinvention of death. Berkeley: Univ. of California Press.

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                                                        This book describes how the category of brain death was invented to make organ transplant possible. Drawing on long-term ethnographic research in North America and Japan, the author shows how this new category was easily incorporated into North American clinical practice, yet resisted and then restricted in Japan. This comparative analysis demonstrates that brain death is not a purely biological event; rather, it is a culturally and historically constructed category.

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                                                        • Pols, Jeannette, Bernike Pasveer, and Dick Willems. 2018. The particularity of dignity: Relational engagement in care at the end of life. Medicine, Health Care, and Philosophy 21.1: 89–100.

                                                          DOI: 10.1007/s11019-017-9787-9Save Citation »Export Citation »E-mail Citation »

                                                          The authors examine dignity as a relational practice in end-of-life care. Beginning with a critical review of the literature, they then draws on focus groups with Dutch physicians and nurses and an empirical ethics approach. They show how these clinicians engaged with dignity as an interactional concern emergent from care for the other, rather than an abstract principle.

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                                                          • Robben, Antonius C. G. M., ed. 2018. A companion to the anthropology of death. Malden, MA: Wiley-Blackwell.

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                                                            This edited volume presents a curated selection of anthropological research on death. The book is divided into six parts: (1) mortuary rituals, (2) emotions, (3) massive death, (4) regeneration, (5) corporeal mortality, and (6) biomedical issues. The last three sections are of particular relevance for the bioethics of end-of-life care.

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                                                            • Stonington, Scott. 2012. On ethical locations: The good death in Thailand, where ethics sit in places. Social Science & Medicine 75:836–844.

                                                              DOI: 10.1016/j.socscimed.2012.03.045Save Citation »Export Citation »E-mail Citation »

                                                              This article considers the role of place in shaping end-of-life decision making. Drawing on ethnographic fieldwork in Thailand, Stonington shows how place contributes to attributions of a good death. Many Thai consider it ethical to withdraw life-sustaining treatment at home, an optimal place for the soul’s rebirth, but not in the hospital, an amoral place for dying.

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                                                              Medical Aid-in-Dying

                                                              Medical aid-in-dying (AID) is a broad category encompassing euthanasia, the use of a lethal substances to end a patient’s life, and assisted suicide or assisted death, in which a physician writes a lethal prescription for the purpose of hastening a patient’s death. These practices are legally authorized in several jurisdictions worldwide under certain circumstances. Bioethical scholarship on medical aid-in-dying has focused primarily on questions of legalization and the moral permissibility of the practice. Empirical studies on what medical aid-in-dying looks like in permissive jurisdictions have been somewhat more limited. Anthropological research on medical aid-in-dying has provided a distinctive, culturally informed perspective on the issue, exploring the concepts of personhood, suffering, autonomy, dignity, and dependency that influence the desire of terminally ill patients to end their lives on their own terms, as well as the respective roles of medical, politico-legal, and religious institutions in administering and resisting AID. Norwood 2009 offers the first book-length ethnography of medical aid-in-dying with the author’s account of euthanasia in the Netherlands. Richards 2017 and Gandsman 2018 examine the motives of right-to-die proponents in the United Kingdom and right-to-die activists in North America and Australia, respectively. Gandsman 2018 complicates the notions of autonomy on which right-to-die debates are predicated, while Buchbinder 2018 is an account of several AID deaths in Vermont that similarly challenges dominant advocacy narratives on the role of autonomy in AID. Karsoho, et al. 2016 analyzes legal documents surrounding the decriminalization of AID in Canada to explore how proponents of the practice understand the role of suffering in the desire for AID. Hannig 2019 examines how the relationship between medical aid-in-dying and suicide is discursively managed by a range of social actors. Together, these articles all highlight the social dimensions of this emergent form of death, challenging public and scholarly discourses that cast medical aid-in-dying as an act of individualism.

                                                              • Buchbinder, Mara. 2018. Choreographing death: A social phenomenology of medical aid-in-dying in the United States. Medical Anthropology Quarterly 32.4: 481–497.

                                                                DOI: 10.1111/maq.12468Save Citation »Export Citation »E-mail Citation »

                                                                This article traces the social phenomenology of the deaths of several patients who pursued an assisted death under Vermont’s AID statute. It shows how AID produces distinctive forms of sociality and dependency that invite terminally ill people and caregivers to choreograph death in a collaborative fashion. These findings contrast with advocacy and media discourses in the United States that characterize AID as a means to attain an autonomous death.

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                                                                • Gandsman, Ari. 2018. Paradox of choice and the illusion of autonomy: The construction of ethical subjects in right-to-die activism. Death Studies 42.5: 329–335.

                                                                  DOI: 10.1080/07481187.2017.1396646Save Citation »Export Citation »E-mail Citation »

                                                                  Gandsman identifies a central tension in the right-to-die debate: activists demand their autonomy rights to choose their own deaths, while social forces constrain their freedom. He then explores how a group of right-to-die activists in North America and Australia construct a moral worldview in their activism that transcends the limiting rhetorics of autonomy and control and highlights instead the enactment of care and responsibilities to others.

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                                                                  • Hannig, Anita. 2019. Author(iz)ing death: Medical aid-in-dying and the morality of suicide. Cultural Anthropology 34.1: 53–77.

                                                                    DOI: 10.14506/ca34.1.08Save Citation »Export Citation »E-mail Citation »

                                                                    Hannig uses interviews, ethnographic observations, and archival research on the legalization of medical aid-in-dying to examine how debates about the contested boundaries between assisted dying and suicide reflect understandings of agency, responsibility, and rationality with respect to hastened death. Specifically, she explores a dialectic between authorship and authorization with respect to assisted dying and suggests that agency over intentional death is always partially distributed among external agents.

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                                                                    • Karsoho, Hadi, Jennifer R. Fishman, David K. Wright, and Mary Ellen Macdonal. 2016. Suffering and medicalization at the end of life: The case of physician-assisted dying. Social Science & Medicine 170:188–196.

                                                                      DOI: 10.1016/j.socscimed.2016.10.010Save Citation »Export Citation »E-mail Citation »

                                                                      The authors analyze Carter v. Canada, the Supreme Court case that decriminalized euthanasia and AID in Canada in 2015. Using interviews with key stakeholders and analysis of legal documents, they show how proponents viewed mainstream medicine and palliative care as producing suffering at the end of life. For proponents, medicine’s complicity in the production of suffering demands a counter-response in the form of medicalized assistance with hastening death.

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                                                                      • Norwood, Frances. 2009. The maintenance of life: Preventing social death through euthanasia talk and end-of-life care—lessons from the Netherlands. Chapel Hill, NC: Carolina Academic.

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                                                                        In this ethnography of euthanasia in the Netherlands, Norwood draws on direct observations and in-depth observations with patients, families, and physicians to describe Dutch euthanasia policy from a comparative cultural perspective. Her main argument is that euthanasia functions primarily as a social discourse that promotes affiliation and social control, and only rarely culminates in a euthanasia death.

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                                                                        • Richards, Naomi. 2017. Assisted suicide as a remedy for suffering? The end-of-life preferences of British “suicide tourists.” Medical Anthropology 36.4: 348–362.

                                                                          DOI: 10.1080/01459740.2016.1255610Save Citation »Export Citation »E-mail Citation »

                                                                          Richards examines the motives of two groups of right-to-die proponents: participants in a self-deliverance (rational suicide) workshop in the United Kingdom, and individuals who had applied to a Swiss right-to-die organization for help in ending their lives. It explores participants’ existential suffering and aesthetic preferences for a good death, which emphasize the desire for a particular kind of “natural” death.

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                                                                          Organ Transplantation

                                                                          Organ transplantation has in some ways served as the prototype case for an anthropology of bioethics, due to variation in how transplantation is socially organized across the globe, its production of medical tourism, its contentiousness among certain religious groups, and its politically and ethically charged nature. Ikels 2013 suggests that organ transplantation is a major object of inquiry for the anthropology of biomedicine because it encapsulates the themes of how society adapts to major biomedical innovations, and how such innovations, in turn, change the way we understand and relate to our bodies. Anthropologists have been particularly attentive to issues overlooked by other scholars, such as the experiences of donors and donor families, the role of gender, and the ways in which sociocultural, political, and economic forces shape transplantation and the related phenomena of donation, procurement, commodification, and transplant tourism. Anthropological scholarship on organ transplantation can be broadly divided into two categories, descriptive and normative, with most work falling into the former category. Joralemon 1995 is an analysis of cultural discourses surrounding debates about organ procurement and identifies tensions between ideologies of gift-giving and those of property-rights. Hogle 1998 is an examination of human tissue procurement in Germany and is one of the first studies to provide a comparative perspective on organ transplantation outside the United States. Lock 2002 (cited under End of Life) provides an ethnographic comparison of brain death in North America and Japan, describing key differences in transplantation practices in these two settings. Kaufman, et al. 2006 and Sharp 2006 examine the experiences of living donors and cadaveric donor recipients, respectively, in the United States. Hamdy 2012 argues for a bioethics rebound: an opportunity for bioethics to recover from its failed collaboration with the social sciences. Crowley-Matoka 2016 explores the gendered and familial dimensions of transplantation in Mexico. Heinemann 2013 describes enactments of care among kin in the aftermath of transplantation in the United States. In addition to such descriptive accounts, some anthropologists have taken normative positions on debates about transplant tourism and organ sales. Cohen 1999 uses ethnographic data from India to challenge the arguments for permitting the sale of kidneys. Scheper-Hughes 2005 also rejects these arguments, using data from investigations in Israel, the Phillipines, and Moldova. Both authors argue for greater attention to the social, political, and economic conditions that motivate poor people to sell kidneys.

                                                                          • Cohen, Lawrence. 1999. Where it hurts: Indian materials for an ethics of organ transplantation. Daedalus 128.4: 135–165.

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                                                                            Cohen draws on ethnographic fieldwork in India to critique the arguments in favor of permitting the sale of kidneys. He argues that ethical analysis cannot be reduced to a dyadic relation between donor and recipient, and urges more sustained, contextual attention to the social, political, and economic conditions that give rise to commodification, noting that most people sell a kidney to pay off existing debts and become indebted again.

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                                                                            • Crowley-Matoka, Megan. 2016. Domesticating organ transplant: Familial sacrifice and national aspiration in Mexico. Durham, NC: Duke Univ. Press.

                                                                              DOI: 10.1215/9780822374633Save Citation »Export Citation »E-mail Citation »

                                                                              This book provides an ethnographic depiction of organ transplant in Mexico as a family matter. Crowley-Matoka charts the social course of kidney donation from living relatives, from asking for and donating a kidney, to transplantation and recovery. Her analysis focuses on the gendered dimensions of kidney donation, highlighting the role of mothers, or mujeres sufridos (suffering women) as cultural icons who perform important sacrifices as gendered enactments of care.

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                                                                              • Hamdy, Sherine. 2012. Our bodies belong to God: Organ transplants, Islam, and the struggle for human dignity in Egypt. Berkeley: Univ. of California Press.

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                                                                                This book examines national debates about organ transplantation in Egypt during a period of social and political transformation. Hamdy examines the social conditions that gave rise to high rates of kidney failure and the commodification of kidneys, and explores why patients and families continued to object to transplantation despite the support of religious scholars. A central goal of the book is to expand bioethics to incorporate attention to sociopolitical processes.

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                                                                                • Heinemann, Laura Lynn. 2013. For the sake of others: Reciprocal webs of obligation and the pursuit of transplantation as a caring act. Medical Anthropology Quarterly 28.1: 66–84.

                                                                                  DOI: 10.1111/maq.12060Save Citation »Export Citation »E-mail Citation »

                                                                                  Heinemann reports findings from ethnographic fieldwork among patients, families, and clinicians in a midwestern US transplant center. Exploring care and moral obligations toward kin in the aftermath of transplantation, she suggests that pursuing transplant is not a choice but an expression of moral obligation to loved ones. Through such enactments of care, transplant patients proved themselves to be acting as caregivers to others as much as recipients of care.

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                                                                                  • Hogle, Linda. 1998. Recovering the nation’s body: Cultural memory, medicine, and the politics of redemption. New Brunswick, NJ: Rutgers Univ. Press.

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                                                                                    This book examines the use of bodily materials in contemporary Germany, where the aftermath of Nazi medical experimentation reverberates through biomedical practice and policymaking. It was the first book-length ethnography to analyze the procurement of human tissue, and it does so through a unique cultural and historical lens.

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                                                                                    • Ikels, Charlotte. 2013. The anthropology of organ transplantation. Annual Review of Anthropology 42:89–102.

                                                                                      DOI: 10.1146/annurev-anthro-092611-145938Save Citation »Export Citation »E-mail Citation »

                                                                                      This review article describes anthropological research on organ transplantation, identifying two major strands of scholarship: (1) the experiences, adjustment, and meaning-making of organ recipients, and (2) critical perspectives on the commodification of organs, ethical questions about transplant tourism, and the category of brain death. Ikels notes that anthropologists have criticized bioethics for overemphasizing the role of autonomy in organ transplantation and neglecting cultural context.

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                                                                                      • Joralemon, Donald. 1995. Organ wars: The battle for body parts. Medical Anthropology Quarterly 9.3: 335–356.

                                                                                        DOI: 10.1525/maq.1995.9.3.02a00040Save Citation »Export Citation »E-mail Citation »

                                                                                        Joralemon examines the shortage of organs for transplantation and controversy over procurement strategies. He suggests that public controversy over these matters reveals an ideological debate between gift-giving or property rights as cultural guideposts to lead into new biotechnological terrain. For Joralemon, the extent to which transplantation will be accommodated by society depends on how well it rejects these competing ideologies.

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                                                                                        • Kaufman, Sharon, Ann Russ, and Janet Shim. 2006. Aged bodies and kinship matters: The ethical field of kidney transplant. American Ethnologist 33.1: 81–99.

                                                                                          DOI: 10.1525/ae.2006.33.1.81Save Citation »Export Citation »E-mail Citation »

                                                                                          This article examines the growing practice of kidney transplant to people over the age of seventy, from both living and cadaver donors, in the United States. The authors show how transplanting from younger to older people raises new questions of ethics and social/familial responsibility, and analyze how changing expectations concerning longevity reshape ideas about moral obligations to kin.

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                                                                                          • Scheper-Hughes, Nancy. 2005. The last commodity: Post-human ethics and the global traffic in “fresh” organs. In Global assemblages: Technology, politics, and ethics as anthropological problems. Edited by Aihwa Ong and Stephen J. Collier, 145–168. Malden, MA: Blackwell.

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                                                                                            This essay draws on fieldwork and covert investigations on transplant tourism in several countries to describe how the human organs market functions. Scheper-Hughes criticizes bioethics for not resisting the commodification of organs and for serving as a handmaiden to biotechnological interests. She also rejects the autonomy-based arguments regarding the right to sell a body part, which overlook the social context and conditions that give rise to such markets.

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                                                                                            • Sharp, Lesley. 2006. Strange harvest: Organ transplants, denatured bodies, and the transformed self. Berkeley: Univ. of California Press.

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                                                                                              This book reports on Sharp’s fieldwork with transplant recipients, surviving kin of donors, and clinicians in the United States. She argues that much of the social scientific literature on organ transplantation overlooks procurement and donation. She examines the social relationships that arise in response to cadaveric donation, highlighting the new modes of relating that emerge from the efforts of donor families and recipients to make sense of this practice.

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                                                                                              Prognosis, Secrecy, and Disclosure

                                                                                              Anthropological work on disclosure in clinical settings highlights how cultural dynamics of authority, knowledge, and control shape standards and practices concerning prognostic disclosure. Bioethical frameworks often present debates about truth-telling in the clinic in terms of an underlying (and often simplistic) tension between paternalism and patient autonomy. However, Miyaji 1993 demonstrates that respect for autonomy can be interpreted in various ways; it is not always clear which actions promote it. Anthropological perspectives have deepened and complicated the sociocultural values that inform prognostic practices, including secrecy, hope, and care. They have also highlighted the changing norms, culturally and historically, with regard to prognostic disclosure. In the 1960s and 1970s, clinical standards in US medicine shifted toward full prognostic disclosure, particularly with respect to cancer. Glaser and Strauss 2017 (originally published in 1965), the first ethnography of dying in the hospital, reveals contextual and temporal variation in patients’ awareness of dying and shows how awareness is institutionally produced. Although clinical attitudes toward prognostic disclosure with children remained very paternalistic, Bluebond-Langner 1978 shows that pediatric leukemia patients nevertheless came to know about their terminal prognoses, even though they were not explicitly informed of them. Gordon and Paci 1997 examines cancer disclosure practices in Italy during a period of cultural change, in which some physicians and families were beginning to challenge the prevailing practice of concealment and nondisclosure. The authors argue that practices surrounding silence and concealment are not only clinical or bioethical, but also entail strategies for keeping emotions out of the social arena. Del Vecchio Good, et al. 1990 invokes comparative perspectives on the United States, Japan, and Italy to illustrate how hope is implicated in shifting practices of disclosure. Van Hollen 2017 suggests that bioethical debates that pit the individual’s right to information against cultural pluralism have overlooked the central role of context in informing disclosure practices. This article also discusses the ethics of the anthropologist intervening in processes of disclosure and nondisclosure. A final key contribution has been to analyze clinical disclosure as a performative act with powerful social effects. Christakis 1999 is an analysis of physicians’ beliefs about prognosis as a form of self-fulfilling prophecy: the idea that disclosing a terminal diagnosis can make it come true. Brada 2013 similarly addresses the social power of disclosure by examining diagnostic disclosure with pediatric AIDS patients in Botswana.

                                                                                              • Bluebond-Langner, Myra. 1978. The private worlds of dying children. Princeton, NJ: Princeton Univ. Press.

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                                                                                                This groundbreaking book reports findings from a clinical ethnography of pediatric leukemia in the midwestern United States, at a time when this diagnosis had a very grim prognosis. Bluebond-Langner shows, first, that the young children (ages 3–9) studied were aware that they were dying even though their adult caregivers withheld this information, and, second, how and why the patients concealed this awareness from adults.

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                                                                                                • Brada, Betsey Behr. 2013. How to do things to children with words: Language, ritual, and apocalypse in pediatric HIV treatment. American Ethnologist 40.3: 437–451.

                                                                                                  DOI: 10.1111/amet.12031Save Citation »Export Citation »E-mail Citation »

                                                                                                  Brada describes how US pediatricians in Botswana used ritual speech to conceal children’s HIV diagnoses from them, out of fears that naming HIV properly would impede their capacity for chronic illness self-management by portending imminent death. She identifies and analyzes a practice of “disclosure catechism” in which children recited disease-related knowledge with increasing sophistication and specificity over time, as clinicians gradually replaced euphemisms with scientific terminology in a stepwise progression.

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                                                                                                  • Christakis, Nicholas A. 1999. Death foretold: Prophecy and prognosis in medical care. Chicago: Univ. of Chicago Press.

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                                                                                                    This book, written by a sociologist and physician, uses social scientific methods and the author’s personal clinical experience to explore the topic of medical prognosis from a cultural perspective. Christakis identifies two fundamental paradoxes: (1) physicians both avoid and engage prognosis, and (2) the uncertainty of prognosis leads to both avoidance and feelings of control and hope.

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                                                                                                    • Del Vecchio Good, Mary-Jo, Byron J. Good, Cynthia Schaffer, and Stuart E. Lind. 1990. American oncology and the discourse on hope. Culture, Medicine, and Psychiatry 14.1: 59–79.

                                                                                                      DOI: 10.1007/BF00046704Save Citation »Export Citation »E-mail Citation »

                                                                                                      The authors explore the culture of oncology practice in the United States as compared to Italy and Japan. After describing the shifting societal norms regarding the disclosure of cancer, they shows how the discourse on hope has become more central to American oncology practice. They suggest that cultivating hope through high-tech treatment options has become more crucial as disclosures have become more truthful.

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                                                                                                      • Glaser, Barney G., and Anselm L. Strauss. 2017. Awareness of dying. New York: Routledge.

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                                                                                                        Originally published in 1965. This classical hospital-based ethnography was the first study of dying in hospitals. The authors describe the social organization of death and dying from the perspective of the emergent awareness of hospital staff, patients, and family members that death is imminent, and develop a theoretical framework for such awareness.

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                                                                                                        • Gordon, Deborah R., and Eugenio Paci. 1997. Disclosure practices and cultural narratives: Understanding concealment and silence around cancer in Tuscany, Italy. Social Science and Medicine 44.10: 1433–1452.

                                                                                                          DOI: 10.1016/S0277-9536(96)00198-0Save Citation »Export Citation »E-mail Citation »

                                                                                                          The authors examine disclosure practices concerning cancer diagnosis in Italy during a period of cultural change. They identify two opposing narratives that are held in tension within Italian society: a social embeddedness narrative, which emphasizes social unity and hierarchy, and an autonomy-control narrative, which highlights autonomy and individualism. They propose that communication about serious illness is not entirely medical; rather, it is embedded in other social contexts and relationships.

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                                                                                                          • Miyaji, Naoko T. 1993. The power of compassion: Truth-telling among American doctors in the care of dying patients. Social Science & Medicine 36.3: 249–264.

                                                                                                            DOI: 10.1016/0277-9536(93)90008-RSave Citation »Export Citation »E-mail Citation »

                                                                                                            Miyaji explores the perspectives of US physicians regarding truth-telling in caring for dying patients. She reports that physicians tend to respect patients’ rights to information about their health to support autonomous decision making, reflecting informed consent doctrine as a dominant bioethical framework. At the same time, she shows that physicians still hold considerable power to manage the information-giving process and interpret informed consent principles creatively.

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                                                                                                            • van Hollen, Cecilia Coale. 2017. Handle with care: Rethinking the rights versus culture dichotomy in cancer disclosure in India. Medical Anthropology Quarterly 32.1: 59–84.

                                                                                                              DOI: 10.1111/maq.12406Save Citation »Export Citation »E-mail Citation »

                                                                                                              Van Hollen describes two competing views of cancer disclosure: the rights-based argument, which holds that people have a right to information about their health, and the cultural argument, which holds that this information may cause more harm than good in certain cultural contexts. She uses ethnographic data from India to reframe this debate, focusing on the context of such disclosures rather than the content of what is disclosed.

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                                                                                                              Genetics and Genomics

                                                                                                              The race to sequence the human genome in the 1990s helped to launch a series of anthropological studies investigating the social dimensions of genetic disorders. Many of these studies were supported by the National Human Genome Research Institute’s earmarking of funds to study the ethical, legal, and social implications of genetic and genomic research for individuals, families, and communities. This body of work has explored how people engage with and make sense of genetic information to understand health and bodies, make decisions for family members, and manage medical concerns. Anthropological research on genetics has focused on three primary areas: (1) the medical management of genetic disorders, (2) the genetic basis of race, and (3) cultural perspectives on how genetic and genomic research is conducted. Most selections in this section concern the medical management of genetic disorders. Konrad 2003 introduces the concept of genealogical ethics to describe how people reckon with disclosure of genetic information to family members. Heath, et al. 2007 proposes the concept of genetic citizenship to represent the new forms of civic engagement and social responsibility entailed by genetic identities. Timmermans and Buchbinder 2010 advances the category of patients-in-waiting and suggest that this emergent category is an important consequence of genetic screening. Raspberry and Skinner 2011 uses the concept of genetic responsibility to describe reproductive decision making among women who carry the fragile X gene. Lock 2013 examines the implications of epigenetics for debates about the nature/culture divide. Lee 2017 analyzes direct-to-consumer genetic testing as a paradigmatic example of precision medicine and the neoliberalization of health care. Fullwiley 2011 examines the treatment of sickle cell disease in Senegal, one of the few accounts of genetic disease in the global South. Additional studies represent the latter two categories of research. Koenig, et al. 2008 reviews debates about the biological basis for race in light of innovations in genomics. Rapp 2000 (cited under Reproductive Technologies and Decision Making) ventures into scientific laboratories to see how chromosomal abnormalities are detected. Reardon 2017 asks who benefits from the Human Genome Project and considers the injustices raised by unequal benefits. Taussig 2009 shows how genetics research and practice in the Netherlands is shaped by the Dutch cultural ideals of ordinariness and tolerance. Bharadwaj and Glasner 2009 and Sunder Rajan 2006 (both cited under Ethics in Biomedical Research) address the rise of embryonic stem cell research and genomic research for drug development in India.

                                                                                                              • Fullwiley, Duana. 2011. The enculturated gene: Sickle cell health politics and biological difference in West Africa. Princeton, NJ: Princeton Univ. Press.

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                                                                                                                This book examines experiences and understandings of sickle cell disease in Dakar, Senegal. Fullwiley shows how widespread scientific beliefs that a favorable sickle cell haplotype proliferated in Senegal obscured the reality of Senegalese survival strategies to combat limited resources and insufficient care. The book is particularly significant because social studies of genetics have usually focused on wealthier countries in the global North.

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                                                                                                                • Heath, Deborah, Rayna Rapp, and Karen-Sue Taussig. 2007. Genetic citizenship. In A companion to the anthropology of politics. Edited by David Nugent and Joan Vincent, 153–167. Malden, MA: Wiley-Blackwell.

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                                                                                                                  This chapter introduces the concept of genetic citizenship to describe the interconnections between individual rights and the state’s responsibility to care for society’s health. The authors use the concept to explore the work of patient advocacy groups based on genetic disorders and the social movements emergent from new biosocial identities. (See the Oxford Bibliographies in Anthropology article “Biological Citizenship.”)

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                                                                                                                  • Koenig, Barbara, Sandra Soo-Jin Lee, and Sarah Richardson, eds. 2008. Revisiting race in a genomic age. New Brunswick, NJ: Rutgers Univ. Press.

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                                                                                                                    The chapters in this edited collection examine debates about the biological basis for race to foster interdisciplinary dialogue and consider how new findings in the field of genetics have reshaped understandings of race and social identity. The book’s four sections cover: (1) an introduction to key concepts, (2) race-based therapeutics, (3) commercial genetic ancestry tests, and (4) public policy and media discourses.

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                                                                                                                    • Konrad, Monica. 2003. From secrets of life to the life of secrets: Tracing genetic knowledge as genealogical ethics in biomedical Britain. Journal of the Royal Anthropological Institute 9.2: 339–358.

                                                                                                                      DOI: 10.1111/1467-9655.00153Save Citation »Export Citation »E-mail Citation »

                                                                                                                      Konrad proposes that genetic knowledge forms the basis for a genealogical ethics that guides the sharing of genetic information between kin and medicalizes kinship. It shows how genetic disease fosters new forms of secret-keeping and practices of disclosure. The argument builds on the author’s research on in vitro fertilization and predictive genetic testing for Huntington’s disease.

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                                                                                                                      • Lee, Sandra Soo-Jin. 2017. Consuming DNA: The good citizen in the age of precision medicine. Annual Review of Anthropology 46:33–48.

                                                                                                                        DOI: 10.1146/annurev-anthro-102116-041547Save Citation »Export Citation »E-mail Citation »

                                                                                                                        This review article analyzes direct-to-consumer genetic testing as part of a cultural shift in medicine that reframes patients as consumers and exemplifies broader neoliberal trends in health care.

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                                                                                                                        • Lock, Margaret. 2013. The epigenome and nature/nurture reunification: A challenge for anthropology. Medical Anthropology 32.4: 291–308.

                                                                                                                          DOI: 10.1080/01459740.2012.746973Save Citation »Export Citation »E-mail Citation »

                                                                                                                          Drawing on research on susceptibility genes for Alzheimer’s disease, Lock shows how the emergence of epigenetics revitalizes longstanding debates in anthropology and related fields about the relationship between nature and nurture. While epigenetics dislodges genetic determinism and secures a role for environmental factors in disease, Lock argues that the conceptual shift it represents still risks overlooking the social, economic, and political foundations of health.

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                                                                                                                          • Raspberry, Kelly, and Debra Skinner. 2011. Enacting genetic responsibility: Experiences of mothers who carry the fragile X gene. Sociology of Health and Illness 33.3: 420–433.

                                                                                                                            DOI: 10.1111/j.1467-9566.2010.01289.xSave Citation »Export Citation »E-mail Citation »

                                                                                                                            The authors report findings from interviews with mothers who are carriers of the fragile X gene about their future reproductive decision making. They propose the concept of genetic responsibility to explore how mothers reckon with their obligations to future kin vis-à-vis genetic disease. In doing so, they show that genetic information has consequences not just for oneself but for future generations as well.

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                                                                                                                            • Reardon, Jenny. 2017. The postgenomic condition: Ethics, justice, and knowledge after the genome. Chicago: Univ. of Chicago Press.

                                                                                                                              DOI: 10.7208/chicago/9780226345192.001.0001Save Citation »Export Citation »E-mail Citation »

                                                                                                                              This book ethnographically examines the aftermath of the Human Genome Project to address questions of justice raised by unequal access to the benefits of the genomic revolution. Drawing on fieldwork in labs, commercial startups, government agencies and civic spaces, Reardon shows how efforts to democratize genomics exposed the limits of liberalism in resource-constrained settings.

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                                                                                                                              • Taussig, Karen-Sue. 2009. Ordinary genomes: Science, citizenship, and genetic identities. Durham, NC: Duke Univ. Press.

                                                                                                                                DOI: 10.1215/9780822391036Save Citation »Export Citation »E-mail Citation »

                                                                                                                                This book is an ethnography of genetics in the Netherlands. Using ethnographic data collected in a major genetics center and a range of community settings, Taussig illustrates how genetics practice in the Netherlands is shaped by two overriding Dutch social ideals that exist in tension with one another: a desire for ordinariness and a commitment to tolerance of social difference.

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                                                                                                                                • Timmermans, Stefan, and Mara Buchbinder. 2010. Patients-in-waiting: Living between sickness and health in the genomics era. Journal of Health and Social Behavior 51.4: 408–423.

                                                                                                                                  DOI: 10.1177/0022146510386794Save Citation »Export Citation »E-mail Citation »

                                                                                                                                  This article uses ethnographic data on newborn screening for genetic disorders in California to develop the concept of patients-in-waiting: a distinctive category of patients who are neither sick nor well. The authors identify four characteristics of patients-in-waiting: (1) inhabiting a liminal state between health and disease, (2) externally imposed uncertainty about the nature of disease, (3) prolonged medical surveillance, and (4) shaping illness identity.

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                                                                                                                                  Reproductive Technologies and Decision Making

                                                                                                                                  Anthropologists have explored how reproductive technologies introduce new possibilities for reproductive decision making that raise critical questions about parental responsibility, the meanings of disability, and the ethics of abortion. Anthropologists have also complicated notions of reproductive choice by drawing attention to the forms of social privilege necessary to exercise reproductive control, noting that choices are necessarily constrained by access. Contrary to much bioethics scholarship, the purpose of anthropological work on reproductive technologies is not to take a position on the ethics of these technologies and the practices they invite, but rather, to situate them within a broader social and cultural context; explore the values, assumptions, desires, and fears that mobilize their use or avoidance; and track how patients and families navigate a spectrum of reproductive options. See the separate Oxford Bibliographies in Anthropology article “Reproductive Technologies.” Because these technologies initially emerged in Euro-American societies, the ethnographic examination of reproductive technologies marked a new trend for anthropologists to work at home. Rapp 2000 is a study of amniocentesis in the United States, which developed from the author’s personal encounters with the technology in the early 1980s. Casper 1998 describes the emergence of fetal surgery and its production of a new category: the unborn patient. Franklin 1997 explores the growth of in vitro fertilization (IVF) in England, and Franklin and Roberts 2006 describes the related practice of preimplantation genetic diagnosis, which combines IVF with the selection of embryos to avoid known genetic disorders. Raspberry and Skinner 2011 (cited under Genetics and Genomics) describes the decision making of mothers who carry the fragile X gene around future pregnancies. More recently, anthropologists have explored the use of reproductive technologies outside of their countries of origin to show that the cultural meanings of these technologies and the practices surrounding them are not universal. Roberts 2012 examines the use of IVF in Ecuador, foregrounding the role of religion in shaping local views. Inhorn 2012 explores reproductive travel for male infertility in the Middle East. Gammeltoft 2014 is an ethnography of the use of ultrasound imaging in Vietnam. Deomampo 2016 examines commercial surrogacy in India as a process of transnational stratified reproduction. Several collections bring together multiple strands of scholarship conducted by anthropologists in their own societies and abroad. Browner and Sargent 2011 explores reproduction through the lens of globalization. Kaufman and Morgan 2005 and Das and Han 2016 (both cited under End of Life) review applications of reproductive technologies within broader discussions of the anthropology of life and death.

                                                                                                                                  • Browner, Carole H., and Carolyn F. Sargent, eds. 2011. Reproduction, globalization, and the state: New theoretical and ethnographic perspectives. Durham, NC: Duke Univ. Press.

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                                                                                                                                    This edited volume explores how transnational migration, globalization processes, and the growth of reproductive technologies affect reproductive lives of people in diverse societies. It includes a section on biotechnology, biocommerce, and bodily commodification that raises questions that are of particular significance to bioethics scholars.

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                                                                                                                                    • Casper, Monica. 1998. The making of the unborn patient: A social anatomy of fetal surgery. New Brunswick, NJ: Rutgers Univ. Press.

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                                                                                                                                      This book examines the social organization of fetal surgery after it emerged as a viable tool for treating fatal congenital disorders. Casper sets ethnographic research in the United States against the backdrop of abortion politics to analyze the practice from a feminist perspective. The practice of fetal surgery and the advent of the category of unborn patient raise questions about autonomy and the maternal-fetal relationship that hold significance for bioethics.

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                                                                                                                                      • Deomampo, Daisy. 2016. Transnational reproduction: Race, kinship, and commercial surrogacy in India. New York: New York Univ. Press.

                                                                                                                                        DOI: 10.18574/nyu/9781479804214.001.0001Save Citation »Export Citation »E-mail Citation »

                                                                                                                                        India is one of the top destinations for commercial surrogacy in the world. This ethnography of commercial surrogacy in India uses interviews with commissioning parents, surrogates, and physicians to build on, and complicate, the concept of stratified reproduction. In doing so, it shows how the practice exploits racial, class, and gender inequalities.

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                                                                                                                                        • Franklin, Sarah. 1997. Embodied progress: A cultural account of assisted conception. London: Routledge.

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                                                                                                                                          This book charts the growth of infertility medicine in Euro-American societies, focusing on the rise of assisted conception techniques like IVF. Drawing on ethnographic research in England with women undergoing IVF, Franklin explores how new reproductive technologies create new social relations in addition to creating persons. In doing so, Franklin offers a critical rereading of anthropological kinship theory.

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                                                                                                                                          • Franklin, Sarah, and Celia Roberts. 2006. Born and made: An ethnography of preimplantation genetic diagnosis. Princeton, NJ: Princeton Univ. Press.

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                                                                                                                                            Following from Franklin’s earlier work on IVF (Franklin 1997), this book describes the emergence of preimplantation genetic diagnosis (PGD), a technology used in combination with IVF to diagnose and prevent serious genetic disorder. Bridging assisted reproduction with intervention creates new theoretical and ethical questions regarding “designer babies” that Franklin explores through ethnographic research at two PGD centers in England.

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                                                                                                                                            • Gammeltoft, Tine. 2014. Haunting images: A cultural account of selective reproduction in Vietnam. Berkeley: Univ. of California Press.

                                                                                                                                              DOI: 10.1525/california/9780520278424.001.0001Save Citation »Export Citation »E-mail Citation »

                                                                                                                                              This book examines the use of fetal ultrasound imaging for prenatal screening in Hanoi, Vietnam. Gammeltoft places the moral dimensions of reproductive decision making centerstage by following thirty women and tracing how their decision-making processes reveal moral reckoning with notions of individual and collective responsibility and social belonging. She situates these deeply personal decisions within a broader cultural and historical context that acknowledges the country’s history of suffering and loss.

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                                                                                                                                              • Inhorn, Marcia. 2012. The new Arab man: Emergent masculinities, technologies, and Islam in the Middle East. Princeton, NJ: Princeton Univ. Press.

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                                                                                                                                                This ethnography of male infertility in the Middle East draws on Inhorn’s research in Lebanon, Palestine, Syria, and Iraq to disrupt taken-for-granted assumptions about the lives of Middle Eastern men and their masculinity. The book is significant for its exploration of the role of Islam in shaping responses to reproductive technologies and for foregrounding the role of men in reproductive decision making.

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                                                                                                                                                • Rapp, Rayna. 2000. Testing women, testing the fetus: The social impact of amniocentesis in America. New York: Routledge.

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                                                                                                                                                  This book draws on ethnographic research conducted in the United States in the 1990s following the emergence of amniocentesis to explore how women of diverse backgrounds make decisions about prenatal testing. It also shows how their decisions rest on cultural meanings of disability. The book characterizes women confronted with decisions about new reproductive technologies as moral pioneers, a concept that has been redeployed by many anthropologists of reproduction.

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                                                                                                                                                  • Roberts, Elizabeth F. S. 2012. God’s laboratory: Assisted reproduction in the Andes. Berkeley: Univ. of California Press.

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                                                                                                                                                    This book ethnographically examines the practice of assisted reproduction in Ecuador and considers why it is embraced by doctors and families despite being rejected by the Catholic Church. Roberts shows how the Ecuadorean response to IVF depends, in part, on the fact that people in Ecuador view reproduction as always already assisted, whether by kin or by God.

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                                                                                                                                                    Abortion

                                                                                                                                                    Where much bioethical research on abortion has focused on the issue of whether abortion is ethical, anthropological scholarship in this area has focused on empirical questions regarding how women make decisions about, navigate access to, and ultimately experience abortion. Anthropologists have been particularly interested in how different political, legal, and religious contexts shape the practice of abortion. Chi, et al. 2010 analyzes the decision to abort by HIV+ women in Vietnam. Krauss 2018 and Singer 2017 both consider the experiences of women seeking abortion in Mexico City. Buchbinder, et al. 2016 examines how abortion providers in North Carolina respond to laws that raise moral challenges. Mishtal 2015 and Suh 2019 address women’s access to illegal abortion in Poland and Senegal, respectively.

                                                                                                                                                    • Buchbinder, Mara, Dragana Lassiter, Rebecca Mercier, Amy Bryant, and Anne Drapkin Lyerly. 2016. “Prefacing the script” as an ethical response to state-mandated abortion counseling. AJOB Empirical Bioethics 7.1: 48–55.

                                                                                                                                                      DOI: 10.1080/23294515.2015.1019018Save Citation »Export Citation »E-mail Citation »

                                                                                                                                                      The authors analyze the responses of abortion providers to a North Carolina state law, which many providers view as unethical, requiring counseling with state-mandated content. They describe a practice undertaken by some providers of “prefacing the script” with disclaimers and qualifiers to distance themselves from the state-mandated message. They show that abortion providers have strategies for minimizing moral conflicts caused by ideologically motivated laws.

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                                                                                                                                                      • Chi, Bui Kim, Vibeke Rasch, Nguyen Thi Thuy Hanh, and Tine Gammeltoft. 2010. Induced abortion among HIV-positive women in northern Vietnam: Exploring reproductive dilemmas. Culture, Health, & Sexuality 12.Suppl 1: S41–S54.

                                                                                                                                                        DOI: 10.1080/13691050903056069Save Citation »Export Citation »E-mail Citation »

                                                                                                                                                        The authors examine the reproductive decision making of thirteen HIV+ women in northern Vietnam who decided to have an abortion. They analyze their morally fraught decisions as a product of the tension between the desire for a child and concerns about their inability to fulfill maternal responsibilities in light of their HIV status.

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                                                                                                                                                        • Krauss, Amy. 2018. Luisa’s ghosts: Haunted legality and collective expressions of pain. Medical Anthropology 37.8: 688–702.

                                                                                                                                                          DOI: 10.1080/01459740.2018.1458308Save Citation »Export Citation »E-mail Citation »

                                                                                                                                                          In this article, Krauss reports findings from her ethnographic research in Mexico City in the aftermath of the decriminalization of abortion. She suggests that moral stigma surrounding abortion persists in the wake of decriminalization, and that abortion is normalized in this context as a painful and morally fraught practice. She also theorizes women’s emotional responses to abortion in this setting in terms of the collectivization of pain.

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                                                                                                                                                          • Mishtal, Joanna. 2015. The politics of morality: The church, the state, and reproductive rights in postsocialist Poland. Athens, OH: Ohio Univ. Press.

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                                                                                                                                                            This book examines the practice of illegal abortion in postsocialist Poland, where the Catholic Church dominates the political scene, as part of a broader ethnographic exploration of women’s rights in Poland and women’s struggles to defy religious strictures.

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                                                                                                                                                            • Singer, Elyse Ona. 2017. From reproductive rights to responsibilization: Fashioning liberal subjects in Mexico City’s new public sector abortion program. Medical Anthropology Quarterly 31.4: 445–463.

                                                                                                                                                              DOI: 10.1111/maq.12321Save Citation »Export Citation »E-mail Citation »

                                                                                                                                                              This article is based on an ethnographic investigation of the public sector abortion program launched in Mexico City following the decriminalization of abortion in 2007. Drawing on an analysis of clinician-patient interactions, Singer illustrates how abortion providers communicate ideas about women’s personal responsibility to avoid unintended pregnancy through birth control. She shows how this “responsibilization” is tied to a broader cultural shift toward liberal modes of democratic governance.

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                                                                                                                                                              • Suh, Siri. 2019. Metrics of survival: Post-abortion care and reproductive rights in Senegal. Medical Anthropology 38.2: 152–166.

                                                                                                                                                                DOI: 10.1080/01459740.2018.1496333Save Citation »Export Citation »E-mail Citation »

                                                                                                                                                                The Senegalese government authorizes the provision of emergency treatment for complications of abortion despite a prohibition on induced abortion. Suh draws on ethnographic research in Senegal to show how the country’s official metrics overlook the experiences of some women suspected of illegal abortion, who are subjected to discriminatory practices by hospital staff.

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                                                                                                                                                                Ethics in Biomedical Research

                                                                                                                                                                The growth of the pharmaceutical and biotech industries over the past several decades has resulted in new opportunities for anthropologists to investigate biomedical research and ethnographically document the intersections of local, global, and transnational processes of knowledge production. Ethical issues in the conduct of research have been a paramount concern for anthropologists engaged in such research. The studies compiled in this section cluster around four areas: (1) pharmaceutical clinical trials, (2) HIV research in Africa, (3) the use of bio-genetic materials, and (4) animal research. Abadie 2010 describes the experiences of “professional guinea pigs,” healthy participants in phase I clinical trials who rely on research participation as an important source of income. Petryna 2009 examines the business of exporting of clinical trials to middle and low-income countries for corporate gain. Crane 2013 shows how sub-Saharan Africa has become a prime site for HIV research even though the people who live there do not stand to benefit from many of the products of research. Geissler 2013 identifies “unknowing” as an important dimension of biomedical research in Africa, given conditions of socioeconomic scarcity that might threaten to dislodge some of the key assumptions of research. Hoeyer 2005 draws on ethnography of a Swedish biobank to analyze ethical concerns regarding the commodification of bodily materials. Sunder Rajan 2006 examines pharmaceutical research and development in India and the United States. Bharadwaj and Glasner 2009 traces the rise of embryonic stem cell research in India in light of global debates about the ethics of stem cell research. Svendsen and Koch 2013 explores the lab-based practices of substitution by which a neonatal pig comes to stand in for a human neonate. Finally, Sharp 2018 describes how laboratory personnel engaged in research on nonhuman animals relate to animals in ways that reveal a moral orientation to their work. Taken together, these works exemplify how anthropological approaches can elucidate moral dimensions of biomedical research that may escape conventional bioethical frameworks.

                                                                                                                                                                • Abadie, Roberto. 2010. Professional guinea pig: Big pharma and the risky world of human subjects. Durham, NC: Duke Univ. Press.

                                                                                                                                                                  DOI: 10.1215/9780822393245Save Citation »Export Citation »E-mail Citation »

                                                                                                                                                                  This book describes the emergence of a professional class of research participants for phase I clinical trials, healthy volunteers who self-identify as professional guinea pigs. Drawing on ethnographic fieldwork in Philadelphia with these research subjects, Abadie describes how the potential hazards of participation are discounted due to expected financial gains. Abadie suggests that subject payment interferes with participants’ capacity to provide informed consent and he argues for better regulation of subject payment.

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                                                                                                                                                                  • Bharadwaj, Aditya, and Peter Glasner. 2009. Local cells, global science: The rise of embryonic stem cell research in India. London: Routledge.

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                                                                                                                                                                    This book charts the rise of embryonic stem cell research in India, tracing the journey of spare human embryos from IVF clinics to public and private laboratories in which therapeutic applications for stem cells are developed. By situating the discussion within global ethical debates about the use of stem cells for research, Bharadwaj interrogates categories of global and local in the production of scientific knowledge.

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                                                                                                                                                                    • Crane, Johanna. 2013. Scrambling for Africa: AIDS, expertise, and the rise of American global health science. Ithaca, NY: Cornell Univ. Press.

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                                                                                                                                                                      This book describes how and why sub-Saharan Africa has been targeted by wealthy research institutions for HIV research. Drawing on ethnographic research in Uganda and in the United States, Crane examines transnational flows of knowledge, funds, and research materials to show how the global health infrastructure is complicit in the production of health inequality. The book is significant for its subtle critique of global health, which is often considered beyond reproach.

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                                                                                                                                                                      • Geissler, P. W. 2013. Public secrets in public health: Knowing not to know while making scientific knowledge. American Ethnologist 40.1: 13–34.

                                                                                                                                                                        DOI: 10.1111/amet.12002Save Citation »Export Citation »E-mail Citation »

                                                                                                                                                                        This article examines “unknowing” as an important dimension of biomedical research. Geissler draws on an ethnographic study of transnational science in Africa to describe how researchers deliberately bracket knowledge of the inequalities surrounding them to avoid destabilizing key premises of their research. In contrast to the biomedical researchers who sublimate knowledge of their research contexts, Geissler contends that an anthropological ethics is necessarily concerned with taking care of its subjects.

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                                                                                                                                                                        • Hoeyer, Klaus. 2005. The role of ethics in commercial genetic research: Notes on the notion of commodification. Medical Anthropology 24.1: 45–70.

                                                                                                                                                                          DOI: 10.1080/01459740590905642Save Citation »Export Citation »E-mail Citation »

                                                                                                                                                                          Hoeyer begins with the observation that analysts of the ethical concerns arising from the commodification of bodily materials have taken either of two major positions: viewing ethics as a form of power that masks political-economic interests or an idealized mode of reflection. He then uses fieldwork in a Swedish biobank to critically analyze these arguments and propose an alternative that emphasizes the connections, rather than oppositions, between moral reasoning and market forces.

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                                                                                                                                                                          • Petryna, Adriana. 2009. When experiments travel: Clinical trials and the global search for human subjects. Princeton, NJ: Princeton Univ. Press.

                                                                                                                                                                            DOI: 10.1515/9781400830824Save Citation »Export Citation »E-mail Citation »

                                                                                                                                                                            This book describes how rapid growth in the clinical trials industry has led to the search for new markets of human subjects in middle and low-income countries. Petryna draws on research in the United States, Poland, and Brazil to explore ethical questions generated by the offshoring of clinical trials, including questions about the balance of risks and benefits, the enforcement of safety standards, and other modes of regulation.

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                                                                                                                                                                            • Sharp, Lesley. 2018. Animal ethos: The morality of human-animal encounters in experimental lab science. Berkeley: Univ. of California Press.

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                                                                                                                                                                              This book reports on ethnographic research in academic labs in the United States and England that rely on nonhuman animals as experimental subjects. While most bioethical attention on animal research has focused on codified regulations, Sharp focuses instead on lab personnel’s interactions with animals to elucidate the moral dimensions of their everyday work.

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                                                                                                                                                                              • Sunder Rajan, Kaushik. 2006. Biocapital: The constitution of postgenomic life. Durham, NC: Duke Univ. Press.

                                                                                                                                                                                DOI: 10.1215/9780822388005Save Citation »Export Citation »E-mail Citation »

                                                                                                                                                                                This book reports on the author’s multi-sited ethnography of laboratories and startup companies in the United States and India. Sunder Rajan compares pharmaceutical development in the two countries and shows how these practices reveal interconnected changes in capitalism and the life sciences encapsulated in the term biocapital.

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                                                                                                                                                                                • Svendsen, Mette, and Lene Koch. 2013. Potentializing the research piglet in experimental neonatal research. Current Anthropology 54.S7: S118–S128.

                                                                                                                                                                                  DOI: 10.1086/671060Save Citation »Export Citation »E-mail Citation »

                                                                                                                                                                                  This article focuses on the neonatal pig as an experimental model organism. The authors explore how research laboratory practices in Denmark help to infuse the piglet with potential for human health as it stands in for a human neonate, and analyzes the meanings attached to the piglet’s suffering through these processes.

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                                                                                                                                                                                  Informed Consent to Medical Research

                                                                                                                                                                                  Anthropologists have been particularly interested in informed consent to medical research because research in resource-poor settings often involves recruiting vulnerable subjects, many of whom may not understand research or stand to benefit from it. Yet even in the developed world, misunderstanding and miscommunication can occur on various levels and at various points in the process. Anthropological research has highlighted difficulties understanding whether consent is truly informed, the influence of political and economic contexts on practices of consent, and the material culture of informed consent proceedings. Some anthropological scholarship on informed consent has emerged from the experiences of anthropologists translating consent procedures to different cultural settings. Adams, et al. 2007 describes the development of a culturally appropriate informed consent procedure for a clinical trial in the Tibet Autonomous Region of the People’s Republic of China. Other studies report on the functions of informed consent in the authors’ own societies. Sankar 2004 uses transcripts of audio recordings of informed consent sessions for cancer clinical trials in the United States to better understand why the therapeutic misconception—the failure of research participants to appreciate the distinction between research and clinical practice—continues to flourish. Simon, et al. 2006 also examines transcripts from US-based informed consent sessions to characterize the role of altruistic discourse. Kraft, et al. 2018 argues that we ought to move beyond informed consent and focus instead on building trusting research relationships between institutions and patients. Jacob 2007 explores informed consent as a material practice, analyzing the role of the consent form. Finally, Hoeyer and Hogle 2014 reviews trends and themes in the literature and identifies a troubling gap between the intent of informed consent for medical research and how it is actually used (and what it does) on the ground.

                                                                                                                                                                                  • Adams, Vincanne, Suellen Miller, Sienna Craig, et al. 2007. Informed consent in cross-cultural perspective: Clinical research in the Tibetan Autonomous Region, PRC. Culture, Medicine and Psychiatry 31.4: 445–472.

                                                                                                                                                                                    DOI: 10.1007/s11013-007-9070-2Save Citation »Export Citation »E-mail Citation »

                                                                                                                                                                                    This article reports on the authors’ development of a culturally appropriate informed consent procedure for a clinical trial undertaken in the Tibet Autonomous Region. It describes the challenges encountered in this pursuit, including translating concepts such as risk, dealing with low levels of scientific literacy, and navigating cultural views about who has the authority to provide consent. It concludes that, rather than universal standards, greater flexibility is needed.

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                                                                                                                                                                                    • Hoeyer, Klaus, and Linda Hogle. 2014. Informed consent: The politics of intent and practice in medical research ethics. Annual Review of Anthropology 43:347–362.

                                                                                                                                                                                      DOI: 10.1146/annurev-anthro-102313-030413Save Citation »Export Citation »E-mail Citation »

                                                                                                                                                                                      This article reviews anthropological perspectives on informed consent for medical research. Despite widespread beliefs that informed consent can address a wide range of ethical problems related to human subjects research, a gulf exists between intent (what informed consent is meant to achieve) and practice (how people actually deploy informed consent). In closing, the article calls for more anthropological analysis of the moral reasoning underlying understandings of informed consent’s purpose.

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                                                                                                                                                                                      • Jacob, Marie-Andree. 2007. Form-made persons: Consent forms as consent’s blind spot. PoLAR: Political and Legal Anthropology Review 30.2: 249–268.

                                                                                                                                                                                        DOI: 10.1525/pol.2007.30.2.249Save Citation »Export Citation »E-mail Citation »

                                                                                                                                                                                        This article examines the material practice of informed consent, focusing on the consent document. It argues that consent performs a bureaucratic substitution by which the paper comes to stand in for the person herself. Because most people do not actually read it, the consent form is one of a variety of hospital documents that serve to “move things along.”

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                                                                                                                                                                                        • Kraft, Stephanie, Mildred Cho, Katherine Gillespie, et al. 2018. Beyond consent: Building trusting relationships with diverse populations in precision medicine research. American Journal of Bioethics Research 18.4: 3–20.

                                                                                                                                                                                          DOI: 10.1080/15265161.2018.1431322Save Citation »Export Citation »E-mail Citation »

                                                                                                                                                                                          This article challenges the focus of bioethics on informed consent for medical research. Drawing on focus groups conducted with racially and ethnically diverse patients, the authors argue that attention to patients’ values, expectations, and concerns in the development of long-term trust in research relationships, particularly for non-White patients, will be especially important as precision medicine continues to grow.

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                                                                                                                                                                                          • Sankar, Pamela. 2004. Communication and miscommunication in informed consent to research. Medical Anthropology Quarterly 18.4: 429–446.

                                                                                                                                                                                            DOI: 10.1525/maq.2004.18.4.429Save Citation »Export Citation »E-mail Citation »

                                                                                                                                                                                            This article critiques the transmission model of informed consent, which views the purpose of consent as transferring information from researchers to patient-participants. Sankar analyzes transcripts of recorded informed consent sessions for cancer clinical trials to illustrate that researchers and patients bring different goals to the encounter, and that the context of consent discussions shapes (and potentially limits) patients’ comprehension.

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                                                                                                                                                                                            • Simon, Christian, Michelle Eder, Eric Kodish, and Laura Siminoff. 2006. Altruistic discourse in the informed consent process for childhood cancer clinical trials. American Journal of Bioethics 6.5: 40–47.

                                                                                                                                                                                              DOI: 10.1080/15265160600862395Save Citation »Export Citation »E-mail Citation »

                                                                                                                                                                                              This article reports findings from an analysis of audiotaped informed consent sessions for participation in a pediatric cancer clinical trial. It finds that 68 percent of sessions included a discussion of how participation might provide altruistic benefits, such as benefits to scientific knowledge, other children, or “the future” more generally. Use of such altruistic discourse did not significantly influence enrollment decisions.

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                                                                                                                                                                                              Bioethics beyond the Clinic

                                                                                                                                                                                              Much of the anthropological research in bioethics has been based in the institutionally defined spaces of clinical decision making and biomedical research. Yet anthropologists of biomedicine have expanded the scope of social studies of medicine by pushing their critical gaze beyond the clinic. This final section highlights the work of anthropologists who have engaged bioethical concerns in nontraditional spaces of inquiry. Ticktin 2006 examines the moral logics that undergird the treatment of undocumented immigrants in France. Garcia 2010 proposes an ethics of care for heroin addicts that is grounded in community-based social responsibility and departs radically from the prevailing logics of addiction medicine. Stevenson 2014 considers the Canadian government’s response to the Inuit suicide epidemic as a failure of care that paradoxically produces some of the same forms of suffering it seeks to redress. Kulick and Rydström 2015 compares disability and sexuality in Scandinavia and frames sexuality as a matter of justice. Nading 2015 explores the case of a genetically modified mosquito and the debates it incited and elaborates the concept of lively ethics. Together, these works highlight justice and care as two nodes of bioethical inquiry that may be more fully engaged outside of the clinic.

                                                                                                                                                                                              • Garcia, Angela. 2010. The pastoral clinic: Addiction and dispossession along the Rio Grande. Berkeley: Univ. of California Press.

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                                                                                                                                                                                                This moving yet heart-wrenching ethnography of heroin addiction in New Mexico’s Española Valley situates the high rates of addiction and fatal overdose within the region’s history of material dispossession and trauma. Garcia critiques the prevailing logics of biomedical and juridical responses to addiction and calls instead for an ethics of care based on interdependency and social responsibility.

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                                                                                                                                                                                                • Kulick, Don, and Jens Rydström. 2015. Loneliness and its opposite: Sex, disability, and the ethics of engagement. Durham, NC: Duke Univ. Press.

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                                                                                                                                                                                                  This book offers a comparative analysis of how social policies in Sweden and Denmark acknowledge and assist the sexuality of people with disabilities. By framing sexuality as a matter of justice that is differentially realized in these two national contexts, it offers insights into the personal and policy stakes of assisting sexuality and, more generally, how people may be dependent yet still act autonomously.

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                                                                                                                                                                                                  • Nading, Alex. 2015. The lively ethics of global health GMOs: The case of the Oxitec mosquito. BioSocieties 10.1: 24–27.

                                                                                                                                                                                                    DOI: 10.1057/biosoc.2014.16Save Citation »Export Citation »E-mail Citation »

                                                                                                                                                                                                    This article examines the connections between environmental ethics and bioethics, using the case of a genetically modified mosquito engineered to curb the transmission of dengue fever. Drawing on analysis of media coverage and ethical debates about this mosquito, Nading introduces the concept of lively ethics to refer to new modes of ethical regulation and biopolitical governance that acknowledge vital differences between different forms of life, such as humans and mosquitoes.

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                                                                                                                                                                                                    • Stevenson, Lisa. 2014. Life beside itself: Imagining care in the Canadian Arctic. Berkeley: Univ. of California Press.

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                                                                                                                                                                                                      This haunting book draws on ethnographic and archival research on two epidemics experienced by the Canadian Inuit—a contemporary suicide epidemic and the tuberculosis epidemic of the 1940s to the 1960s—to examine multiple forms of care (e.g., bureaucratic care) in Inuit communities. Stevenson’s careful analysis highlights the violence of certain kinds of care and the ethics of attention by which certain forms of suffering come to figure as matters of state concern.

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                                                                                                                                                                                                      • Ticktin, Miriam. 2006. Where ethics and politics meet: The violence of humanitarianism in France. American Ethnologist 33.1: 33–49.

                                                                                                                                                                                                        DOI: 10.1525/ae.2006.33.1.33Save Citation »Export Citation »E-mail Citation »

                                                                                                                                                                                                        This article examines the humanitarian practices through which illness offers an avenue for undocumented immigrants in France to become legal residents. Ticktin analyzes how such processes, rather than supporting human dignity, paradoxically result in diminished humanity because they privilege biological threats to life above social and political forms of suffering.

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