Issue

Practicing Ethics and Ethical Practice: Anthropology, Science, and the Social

One of the first signs under which the Obama administration was placed was that of a “new era of responsibility.”1 We assume that he meant “social responsibility.” And this has been accompanied by regular calls for increased transparency in government and for the revitalization of ethics as much more a part of our public life, in government, business, religion, and science. But there has also at times been a culture war–type fervor accompanying recent discussions of ethics, perhaps more than anywhere else regarding the ethics of science and the ethical conduct of scientists, where the role of science is drawing closer public scrutiny from government and watchdog groups, but also from the participants in scientific research.

We suspect that this fervor is part of the background noise of a growing public awareness of the entanglements of the sciences in efforts to meet a dizzying array of contemporary human, moral, political, financial, medical, technological, and ecological challenges, as these are accompanied by growing recognition that scientific practice is also a kind of social practice. By this, we mean that people—including scientists—are less likely now than previously to define the parameters of scientific practice narrowly, in terms of the laboratory or a comparable controlled environment specifically dedicated to the activities of scientific research and production of results.

Ethical debate among social scientists is part of a bigger picture, punctuated by spectacular ethics crises, such as Abu Ghraib, the financial meltdown, the BP oil spill, and Wikileaks.

Recognition of science as ineluctably social often generates a gatekeeping backlash to defend the integrity of science as such. But recent arguments over ethics, as the chosen mode of public reasoning among social scientists about the morality, limits, and identity of their professional practice,2 present an opportunity constructively to reconsider the relationship of scientific practice of all sorts to the social. This is the case because it is a social relationship that is typically at the heart of these arguments: the often troubled one between social scientists and the so-called human subjects of research.

Ethical debate among social scientists is part of a bigger picture, punctuated by spectacular ethics crises, such as Abu Ghraib, the financial meltdown, the BP oil spill, and Wikileaks, and including such diverse interlocutors as NIH (US National Institutes of Health), UNESCO (United Nations Educational, Scientific, and Cultural Organization), and the Vatican. In the last two years alone, scientific associations in the United States representing psychology, geography, linguistics, anthropology, and economics have revised their professional ethics code or begun to draft one. This trend includes a wide range of other kinds of scientific and creative work with human beings as their subject, such as documentary film, whose filmmakers in recent years have been involved in their own spirited discussions about the ethical ambiguities and lack of ethical standards in their work.3 Though in different ways, each discussion has been grappling with the same sort of problem: how to recognize and where to locate the social in scientific practice in an era when human subjects increasingly expect greater participation in negotiating the directions, terms, outcomes, and significance of research projects.

If the language of scientific controversy, “ethics” also offers often discomfiting ambiguity. The recent Singapore Statement on Research Integrity was meant to “encourage the development of unified policies, guidelines and codes of conduct, with the long-range goal of fostering greater integrity in research worldwide.”4 It was crafted in response to the growth in collaborative scientific relationships across and among nations, even as different countries hold varying ideas about how to achieve and to maintain a practice of science with integrity.

In the last two years alone, scientific associations in the United States representing psychology, geography, linguistics, anthropology, and economics have revised their professional ethics code or begun to draft one.

Anthropology’s ongoing ethical discussion is a particularly instructive window onto the relationship of the sciences to the social since, as perhaps the most “social” of the social sciences, its signature historical method of ethnography requires protracted, and continuous, negotiation with counterparts in the field (that is, the “human subjects” of research) over an extended period of time—often measured in years. Not surprisingly, then, a primary disciplinary axis of attention to ethics has been a focus upon practitioner stance, as this represents different research arrangements that pursue particular social relationships with counterparts, and accompanying commitments.

At present anthropology is debating a plurality of different research stances, including as ethnographer, advocate, and activist, as well as engaged, public, and practicing anthropologist. If differences between these stances correspond to different ostensible purposes for the work of anthropology, in all cases, research is assumed to be embedded in—and produced through—social arrangements of one sort or another. We might say that anthropology is on the far edge of the spectrum of conversation about ethics across the sciences, regularly engaged with (if often contentiously), and inextricable from, the social contexts of its work. But this state of affairs contrasts with how ethics are more routinely discussed elsewhere in the sciences.

One case is the new Presidential Commission for the Study of Bioethical Issues, convened by President Obama in 2009 and understood to represent expertise “relevant across the fields of science, policy, ethics, and religion.” In response to evidence recently come to light about unethical research on sexually transmitted diseases conducted in Guatemala during the 1940s by the US Public Health Service, a major task for this new commission—announced in late 2010—will be a comprehensive review of current federal and international standards to “guard the health and well-being of participants in scientific studies.”5 If an ethical concern for human subjects has been particularly characteristic of debates in anthropology of late too, this has not been exactly in the same ways. The differences are in fact revealing.

The executive order creating the commission states a need to address the implications of rapid advances in biomedicine, understood as a matter of “science and technology.” It names well-known scientific controversies: stem cell research, genetic sequencing, and ownership of genetic materials as intellectual property.6 To this we can add ethical tussles over genetically modified organisms, cloning, personalized medicine, nanotechnology, geoengineering, and the science of climate change, among others. The commission’s first report, released in late 2010, takes up the ethics associated with the new science of synthetic biology, understood as an innovative “emerging technology” that will require “stewardship.”7 But we think this framing of the commission’s work erases most traces of the social, even as social responsibility is one key reason for convening the commission in the first place. Here science is presented as a sometimes problematic intervention into society, requiring oversight, but not in itself an essentially social activity. Anthropology’s arguments complicate this view.

The Role of Ethics in Anthropology

Science is presented as a sometimes problematic intervention into society, requiring oversight, but not in itself an essentially social activity. Anthropology’s arguments complicate this view.

Having modified its Code of Ethics in 2009, the American Anthropological Association is now well underway with a more comprehensive reassessment and revision. The most recent round of ethical debates prompting review originated in concerns about the perception of anthropology’s growing entanglement with activities of the US national security state. Many of these concerns were first articulated in a short 2005 article titled “Spies in Our Midst,” written by anthropologists Hugh Gusterson and David Price, which sounded the alarm over the growing recruitment of anthropologists into the security sector and the ethical questions it raised.8 A primary worry was the unethical nature of “secret and clandestine” research. This long-standing disciplinary anxiety brings into sharp focus a regular concern for the well-being of counterparts “in the field,” or the people identified as human subjects in other scenarios of scientific work. As reflected by these concerns, ethnographic research is taken to be a regular transparent dialogue with counterparts to negotiate obligations and expectations, which contribute to defining the meaning, goals, and outcomes of research.

Anthropology’s occasionally rancorous, always vigorous, discussions of ethics often stumble over the different, unspoken assumptions we tend to have about how ethics relate to the practice of anthropology. We could, for example, contend that the AAA’s Code of Ethics possesses sanctioning power and conceive of it as a stand-alone gatekeeping set of regulations to discriminate “professional” from “unprofessional” conduct. As such, we might view the code as a set of abstract principles defining obligations or responsibilities. In turn these principles would be treated as unambiguously categorical in their translation from meaning to application and as commensurate with strong assertions of disciplinary “core values.”

Alternatively, we could interpret the code to be largely aspirational but keep it in close proximity to our practice, though now conceived as only one part of an ongoing process of ethical decisionmaking informing what we do. In this case, we would treat the code as a dynamic document less dedicated to establishing a disciplinary status quo about right and wrong and more used as a necessary provocation to regular ethical discussion. The purpose of the code in this instance would be as a guide for finding one’s way to an ethical answer rather than as a source for all the answers. That our code could be either prescriptive or aspirational is in contrast to, for example, the ethics code of the American Psychological Association, which of necessity must be both: in addition to conducting research, many psychologists are licensed for clinical practice—a scenario quite distinct from the varieties of “practice” of anthropology falling under clear laws and regulations.

The Dynamic “Field” of Anthropology

However anthropology chooses to engage with ethics, this engagement will have to come to terms with the regularly changing circumstances of professional disciplinary practice. “The field” has long stopped resembling a bounded, often distant, place from which we come and go.

“The field” has long stopped resembling a bounded, often distant, place from which we come and go.

Our methods and attention remain open to new techniques and technologies of collection and storage and new forms of and ideas about “data” and its interpretation. We interact with people now who less resemble human subjects and more counterparts, with whom we often negotiate what are shared if distinct commitments to knowledge production. We operate in changing legal and regulatory environments, where potentially competing claims to knowledge production and ownership of our work might shape its direction and identity. And we continue to actively redefine the role of the “field worker” to include a variety of distinct and overlapping subject positions, with their respective commitments to how our work should circulate and for whom it is intended. This dynamic state of affairs is the status quo.

But the key question of how ethics should relate to practice in a specific fashion is less discussed than is the felt need either to add or to subtract one or another particular ethical standard from the roster of possibilities. This includes consideration of what might be the best balance of specificity and generality when relating our Code of Ethics to our work, or what we might think of as the ethical mini-max challenge. But we think it is unrealistic to anticipate the specific details of future ethical challenges. At present, we would like to develop, instead, an appreciation of ethics that treats them as one part of an ongoing aspirational process, with an ethics code treated as a living document, and which we would expect to be routinely re-negotiated in proximity to the changing circumstances of professional practice rather than at a remote distance. These changing circumstances—often hard to foresee—will inevitably shape future ethical conversations.

Is This a “Core Values” Debate?

If the disciplinary history of anthropology is any indicator, our ethics talk is typically reactive, arising in response to controversial events (e.g., wars) or issues of public import in which anthropologists come to be implicated. Ethics debates are also often about the circumstances of anthropological training, credentialing, research, and disciplinary identity. Ethics are thus an example of self-policing. As anthropologist George Marcus has stated it, ethical debates aspire to a disciplinary “reflexive and self-critical function.”9 Perhaps; yet our semi-regular disciplinary controversies over ethics also suggest a lack of disciplinary consensus over our identity, research methods, modes and places of practice, and topical concerns. Ethics debates are, therefore, opportunities to explore to what extent anthropology’s regularly modified Code of Ethics could expect to spell out in principle clear applicable rules of conduct for the diversity of present and future anthropological work and, as such, serve as a statement of “who we are.” The short answer, we suggest, is: it cannot. And, we argue, this answer is both disciplinarily and ethically desirable.

Ethics are often presented as if a set of principles commensurate with the historical trajectory of the discipline. A prohibition against “secret and clandestine” research, the requirement of informed consent, the necessity of sharing results freely and publicly—all are promoted in conjunction with expectations about the “core values” of anthropology. As such, ethics have been used at once to define and to defend perceived disciplinary boundaries, with the goal of restoring disciplinary matter “out of place,” to jury-rig Mary Douglas’s well-known analysis of symbolic impurities.10

This state of affairs can devolve into a “litany of shame”—in the words of one ethicist and close observer of anthropology’s disciplinary paroxysms11—with mudslinging and calls for censure. As such, ethics become an “othering” frame applied to one or another of what the Sandia anthropologist Laura McNamara calls the “many parallel universes of anthropological practice.”12 Mobilized to such ends, it is possible that ethics could come to underwrite a disciplinary roots movement of sorts, enlisted in a push to restore a more “real” and “pure” anthropology by means of legalistic and prescriptive clarity. Ethics is the tool to counter what Gerald Berreman, disturbed by the discipline’s growing presence in the corporate world, earlier described as a “laissez-faire ethic of free-enterprise research in place of the tradition of humane scholarship,”13 or—as has more recently been described for anthropology’s engagement with the security sector—a growing “regulatory black hole.”14

However, ethics discussions moving out from definitions of core values as long-standing disciplinary norms perhaps purposefully tend to ignore a persistent fact about anthropology: its perpetual lack of such a consensus. In her distinguished lecture at an annual meeting of the AAA, Laura Nader characterized anthropology as an “outrageous science,” given its disrespect for boundaries.15 She meant this as a virtue. Anthropology in fact encompasses an incredible variety of work sites, projects, methods, tools, and interdisciplinary partnerships. Clyde Kluckhohn’s mid-twentieth century quip about anthropology as an “intellectual poaching license” comes to mind.16 So too does Clifford Geertz’s classic discussion of anthropology as genre-blurring. As such, Geertz suggested a stance of skepticism toward most received ideas of what we “ought or ought not to be doing.”17 And Paul Rabinow recently has suggested that the problem for an “anthropology of the contemporary” is sustaining inquiry into what’s going on while not deducing it beforehand.18

To embrace anthropology’s plural identity is not to reject ethics. But it does suggest where we might best locate ethics with respect to our work, liberating them from any forced exercise legislating uniformity in the circumstances—the particularities—of what we do. Our ethics discussions stall when unproblematically privileging any part as the sum of the whole: the study of culture does not identify anthropology; ethnography is not exhaustive of anthropology; nor is the comparative method. A single unitary code, if conceived as a prescriptive code of conduct, is hard put to avoid this problem. And ethics talk as a community-building and discipline-bounding exercise tends to want clear and unambiguous language as a categorical line in the sand about . . . [fill in the blank]. It can be tempting to try to anticipate and to fill in all the blanks. But this can also have the effect of discouraging the regularity of ethical discussion. However, we would encourage regular ethical dialogue, more attentive to the particulars of the social embeddedness of disciplinary practice, perhaps better conceived with Wittgenstein as discussion about relative family resemblances, and differences, among established and emergent forms of disciplinary practice.19

The Ethics of Secrecy and the Social

The 2009 revision of the AAA’s Code of Ethics did not consider the entire code so much as whether to reintroduce certain sections from the 1971 code barring secret and clandestine research and less than full disclosure in reporting results. The final revision, however, did not simply reintroduce such language, recognizing that the contemporary disciplinary landscape is significantly different from that of almost forty years ago. But given that a prohibition against secret activities repeatedly has been added to or removed from successive codes of ethics, our ongoing equivocation about our ethical relationship to the question of “secret and clandestine” makes it good to think with. The 2009 changes were met with a familiar ambivalence by AAA members, with some indicating the new language would and others saying it would not categorically rule out “classified research” as a kind of secret research.20 And we take such a lack of clarity about whether “secret,” “clandestine,” or “classified” cover the same territory in the same ways as indicative of an as yet not well-thought-out suspicion that for each, in different scenes of work and research in practice, potentially different things are on the line.

If not engaged in outright secrecy, anthropology has nevertheless maintained an abiding relationship with deceptions and complicities of various sizes and shapes. One landmark discussion of this is Gary Fine’s “Ten Lies of Ethnography,” which explores the underside, or backstage, of field work. As Fine tells us, “Illusions are necessary for occupational survival,” in ways both trivial and not. Ethnographers cannot, he suggests, be “honest brokers” with nothing to hide and everything to share. We conventionally do not publicly share field notes. We develop our interpretations largely in private. And ethnographic writing is largely accepted on faith. Fine pursues the point that, as he puts it, “we ethnographers cannot help to lie, but in lying reveal truths.” He opts to encourage greater consideration of the sources of ethnographic efficacy in deception, as it is a routine part of the social management of our work.21

Anthropology’s present Code of Ethics aspires to transparency, full disclosure, and prior consent of counterparts regarding all the methods and goals of research. At the same time, the code allows limits to transparency, for example, when preserving the anonymity of victims to protect them from reprisal while documenting wartime atrocities. Ethnographers have recognized a role for a more outright deception while working with human subjects in order to, in the words of Nancy Scheper-Hughes, exploit the “transgressive uses of anthropology,”22 say, while exposing the trafficking of human organs. In short, the open circulation of knowledge encounters limits in our disciplinary public sphere. If the withholding of specific research goals from subjects or from different publics (e.g., in the interest of avoiding panic when researching bioterror threats) does occur, this is not the same as keeping one’s project altogether “secret.”

We suggest that anthropology’s established ethical commitments to openness and to transparency cannot be taken for granted as self-evident commitments. Rather, what they mean necessarily changes with the social contexts of our work. As Fine reminds us, the goal of complete transparency is naive if intended to describe the social relationships constitutive of ethnography. Yet, “secrecy” as deep cover for intentionally concealing or enabling harm to research subjects has to be beyond the pale. As we consider it, the ethics of ethnographic research negotiates the space in between. And we need to keep the door open for an ongoing discussion of resemblances and differences.

We might consider tempering our regular calls for ethical categorical imperatives in favor of an active and sustained ethical dialogue.

One characteristic of anthropology’s periodic discussions of ethics is that they exhibit significant consensus about general principles but a notable lack of consensus in how principles are put into practice. We would be well served, then, to make the details of our practice much more a part of our ethics discussion than has been the case to date. This includes appreciation for our changing research practice and for the changing legibility of our practice as research both inside and outside the academy, as well as for changing disciplinary practice, of which research is but a part, if at all.

We should also avoid a narrow or inward-looking focus on anthropology’s exceptionality (e.g., as ethnography, as the study of culture, or as representing a unique kind of relationship with human subjects) and remain open to disciplinary mobilities in the form of dual-identity professionals, interdisciplinary collaborations, and extra-academic ways of providing professional expertise (as with the analyst or consultant), as well as to the ethics of new technologies as these become part of our scene of research, and other such challenges. We might, too, consider tempering our regular calls for ethical categorical imperatives in favor of an active and sustained ethical dialogue that amounts to more regular traffic along a continuum of potential family resemblances where, rather than “othering,” we are in the habit of imagining what anthropology can be in places we do not expect it or might rarely think to find it, or where it has seldom visited or is yet to appear.

Final Thoughts: Science and the Social

Most often the social implications of scientific work are encountered in negative guise. This usually takes one of three forms: expressed concerns for the “politicization of science,” understood as an attack on scientific freedom, usually as it targets a particular scientist’s work; professional and media attention given to particular examples of science gone morally awry, a basis after all for the original Nuremberg Code for scientific ethics; or evaluations of the application of science for the “public well-being” or “public harm.” But anxieties over politicization, science gone awry, and evaluations of its application all treat scientists or experiments—as individual researchers, specific notorious cases, or as applied to society—as if removed from any context through which scientific research is routinely socially negotiated.

It is revealing to set debate about ethics in the social sciences—where the social implications of professional practice are most evident and fraught, in large part because signature forms of research practice like ethnography make little sense in the absence of associated social contexts of negotiation with counterparts—against a larger background of the recent public attention to ethics. We briefly examined the question of secret and clandestine research in anthropology’s ongoing ethics discussion to show how the discipline’s discourse of ethics is also an argument about how best to come to terms with the social embeddedness of its practice. We emphasized an approach that recognizes the everyday social negotiations of disciplinary practice, including of deception, rather than an exceptionalist approach (e.g., “core values”) that tends to set the discipline apart—including from the social sources of its efficacy.

Anthropology’s ethics debates suggest differences with the ethics frame informing the work of the Obama administration’s new Commission for the Study of Bioethical Issues. Anthropologists routinely encounter human subjects in very different social arrangements “in the field,” where research is much better described as a product of social relationships as opposed to the clinical laboratory. On the one hand, the commission conceives of its work largely within a “bioethics” framework, which tends to assume that people are subject to the experimental method as individual subjects under highly controlled conditions and where the importance of science is presumed to relate to a national investment in “innovation” and in “technology.” On the other hand, the American Anthropological Association recently briefly dropped the word “science” altogether from its long-range plan,23 while many anthropologists view research and social activism as two sides of the same coin, with human subjects less subjects and more counterparts with whom we routinely negotiate the relative transparency and openness of the research process.

We believe that current discussions of ethics in anthropology are an early harbinger of an ongoing relocation of the sciences in public life and an increasing plurality of kinds of scientific practice, at present expressed by ethical debate across the social sciences, where scientific ethics have become one idiom for competing visions of social responsibility. We also think that ethical discussion across the sciences would do well to take more account of the limits of bioethics as an adequate way to conjoin the work of science with its social contexts of relevance. At once potentially too legalistic and with a too attenuated idea of the “public,” bioethics can divert attention from the social purposes of science. Even the most laboratory-based scientific practice represents a social process composed of the negotiation of funding, risk, governing procedures, shepherding of the project to completion, proprietary ownership of data, and presentation of results, among other things. As Duane Roth recently observed about the rise of participatory patient advocacy in the process of organizing clinical drug trials, these have evolved into “collaborative decisions made after open and vigorous debate.”24


Dena Plemmons currently chairs the American Anthropological Association’s Task Force for Comprehensive Ethics Review. She is at UC San Diego, as an adjunct professor in the anthropology department and a research ethicist in the Research Ethics Program.

Robert Albro chaired the AAA’s Commission on the Engagement of Anthropology with the US Security and Intelligence Communities from 2008 to 2009. He is in residence at the International Communication Program of American University’s School of International Service.

  1. 1. Barack Obama, “Inaugural Address” (Washington, DC, January 20, 2009), http://www.nytimes.com/2009/01/20/us/politics/20text-obama.html. []
  2. 2. See, for example, Sheila Jasanoff, Designs on Nature: Science and Democracy in Europe and the United States (Princeton, NJ: Princeton University Press, 2005). []
  3. 3. See Patrica Aufderheide, Peter Jaszi, and Mridu Chandra, Honest Truths: Documentary Filmmakers on Ethical Challenges in Their Work (Washington, DC: Center for Social Media, 2009). []
  4. 4. 2nd World Conference on Research Integrity, “Singapore Statement on Research Integrity,” (Singapore, July 21–24, 2010), http://www.singaporestatement.org/statement.html. []
  5. 5. Barack Obama, “Presidential Memorandum—Review of Human Subjects Protection” (memorandum to Dr. Amy Gutmann, Chair, Presidential Commission for the Study of Bioethical Issues, November 24, 2010), White House, Office of the Press Secretary, November 24, 2010, http://www.whitehouse.gov/the-press-office/2010/11/24/presidential-memorandum-review-human-subjects-protection. []
  6. 6. Exec. Order No. 13521, 74 Fed. Reg. 228 (Nov. 24, 2009), http://bioethics.gov/cms/sites/default/files/Executive-Order-Establishing-the-Bioethics-Commission-11.24.09.pdf. []
  7. 7. Presidential Commission for the Study of Bioethical Issues, New Directions: The Ethics of Synthetic Biology and Emerging Technologies (Washington, DC: December 2010), http://bioethics.gov/cms/synthetic-biology-report. []
  8. 8. Hugh Gusterson and David Price, “Spies in Our Midst,” Anthropology News 46, no. 6 (2005): 39–40. []
  9. 9. George Marcus, “CEAUSSIC: Origin Story and Grand Finale,” American Anthropological Association (blog), December 7, 2009, http://blog.aaanet.org/2009/12/07/ceaussic-origin-story-and-grand-finale/. []
  10. 10. Mary Douglas, Purity and Danger: An Analysis of the Concepts of Pollution and Taboo (London: Ark Paperbacks, 1966), 35. []
  11. 11. George Lucas, Anthropologists in Arms: The Ethics of Military Anthropology (Lanham, MD: Rowan and Littlefield, 2009), 25. []
  12. 12. Laura McNamara, “CEAUSSIC: Ethics Casebook,” American Anthropological Association (blog), January 27, 2010, http://blog.aaanet.org/2010/01/27/ceaussic-ethics-casebook/. []
  13. 13. Gerald Berreman, “Ethics versus ‘Realism’ in Anthropology Redux,” Ethics and the Profession of Anthropology, ed. Carolyn Fluehr-Lobban (Walnut Creek, CA: Altamira Press, 2003), 79. []
  14. 14. Roberto González and Hugh Gusterson, “Taking the Next Step: Why We Should Continue Strengthening the AAA Ethics Code,” Anthropology News 50, no.6 (2009): 14–15. []
  15. 15. Laura Nader, “Anthropology! Distinguished Lecture—2000,” American Anthropologist 103, no. 3 (2001): 610. []
  16. 16. Quoted in Clifford Geertz, “Blurred Genres: The Reconfiguration of Social Thought,” Local Knowledge: Further Essays in Interpretive Anthropology (New York: Basic Books, 1983), 19–35. []
  17. 17. Clifford Geertz, “Blurred Genres,” 21. []
  18. 18. Paul Rabinow, Marking Time: On the Anthropology of the Contemporary (Princeton, NJ: Princeton University Press, 2008). []
  19. 19. Ludwig Wittgenstein, Philosophical Investigations (Malden, MA: Blackwell, 1953). []
  20. 20. Scott Jaschik, “Anthropologists Toughen Ethics Code,” Inside HigherEd, February 19, 2009, http://www.insidehighered.com/news/2009/02/19/anthro. []
  21. 21. Gary Fine, “Ten Lies of Ethnography,” Journal of Contemporary Ethnography 22, no. 3 (1993): 267–94. []
  22. 22. Nancy Scheper-Hughes, “The Ethics of Engaged Ethnography: Applying a Militant Anthropology in Organs-Trafficking Research,” Anthropology News 50, no. 6 (2009): 14. []
  23. 23. Dan Berrett, “Anthropology without Science,” Inside HigherEd, November 30, 2010, http://www.insidehighered.com/news/2010/11/30/anthroscience. []
  24. 24. Duane Roth, “A Third Seat at the Table: An Insider’s Perspective on Patient Representatives,” Hastings Center Report 41, no.1 (2011): 31. []

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