Human Organization, Vol. 65, NQ. 1,2006Copyright @ 2006 by the Society for Applied Anthropology0018;.7259/06/0100046-09$1.40/1

Margaret Everett

Anthropological participation in bioethics, especially in the area of policy-making, has been limited for a number I)f reasons.This paper explores the anthropological critique ofbioethics and considers reasons why anthropologists are not mor'~ visible inbioethics debates. Reflections on the author's own participation on two ethics boards illustrate both the potential co!Cltributionsof the anthropological perspective to bioethics and the challenges for a mor~ effective engagement.

Key words: bioethic$, research, policy-makin~

Introduction argue fora kind of ethical relativism, an attention to ethicaldilemmas as they present themselves in SPecifilC social, cultural,and political contexts (see, for example, Ma(:klin 1998).

This mutual distrust may explain, in part" the relative pau-city of anthropological contributions to the field ofbioethics,and the limited participation of anthropologists in the cottageindustry of ethics panels that have croppecl up in the wakeof the Human Genome Project. What are tlle challenges foranthropologists who seek to engage bioethic:~ on its own turf?This article reviews the anthropological literature on bioeth-ics and uses the author's own experiences on two bioethicscommittees to reflect on the challenges and opportunities foranthropologists seeking to have a voice in policy making.

From 1999 to 2004, I served on two conlInittees chargedwith overseeing and revising Oregon's laJlldmark GeneticPrivacy Act. With the explosion of genetic krlowledge and thegrowing use of genetic testing in clinical and I:esearch settings,concern over possible discrimination, especially the potentialloss of health insurance, sparked the passage of such laws in amajority of states between 1995 and 2000. I was asked to serveon Oregon's Genetic Research Advisory Cornmittee (GRAC)as a "health care consumer" representative roter writing in thelocal newspaper aboutmy own family's experience with a raredisorder and genetic resting. Because I did not serve officiallyas an anthropologist, my experience may al:lmittedly not begeneralizable to the question of anthropologists working inbioethics. Still, my position as a participarlt observer gaveme the opportunity to see how such committees work, howpolicies are shaped and who the key stakeholders are. I couldnot help ~g as both a "consumer" of genetic services andan anthropologist, and I had ample opportullity to reflect onthe possible contributions and limitations of anthropologicalperspectives in such a setting.

T he field ofbioethics emerged in the twentieth centuryfrom an apparent paradox--enthusiasm, on th~ onehand, for new developments in science and medicine,

including new treatments for disease, and on the other hand deepconcerns for themorat dilemmas raised by those same technolo-gies. Grounded in moral philosophy, the field has grown sincethe 1 960s to become a full-fledged academic discipline, with adistinct set of concepts, principles and theories, professionalorganizations and car~er paths (Kleinman, Fox, Brandt 1999).The field has also "gone public," with bioethicists quotedin the media and called to testify in coutts and legislatures.Bioethics has become even more prominent in the past decadeas a result of the Human Genome Project, which earmarked apercentage of its funding for the study of "ethical; legal andsocial issues" (ELSI). Broad changes in health care delivery,medical insurance, and the rise of genetic medicine all playa role in the growing perception of risk posed by expandinggenetic information.

The term "bioethics" has been applied broadly to refer toa wide range of activities and perspectives in bOth clinical andpolicy settings. However, anthropologists and sociologists haveoften criticized "mainstream bioethics"-for its use of abstractprinciples, its inattention to cultural, social and political context,and for its failure to consider equity as an area for ethical delib-eration. Writing about bioethics, anthropologist and psychiatristArthur Kleinman makes the following assessment: "The experi-ence of illness is made over, through the application of ethicalabstractions. ..into a contextless philosophical cons1ruct that isevery bit as professionally centered and divorced from patientssuffering as is the biomedical construction of disease pathology"(1995a: 1669). What is often called "mainstream bioethics,"seems to hold a similarly dim view of anthropologists who

Finding a Seat at the Bioethu~s Table

If anthropologists have found it difficult to find a seat, anda voice, at the policy table, they have found it especially difficultto find a place within bioethics debates. A1]~eady dominated

Margaret Everett is Associate Professor of anthropology at PortlandState University.

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diversity of problems that prenatal diagnosi!; poses for differentsociocultur& groups" (Rapp 2000: 45). Marshall and Koenigargue that medical ethics must deal with the "cultur& construc-tion of morality" (1996: 350). Anthropologists, in fact, havecoined the term "medical ethnoethics" to refer to "the moral tenetsand problems of health care as they are conceived and reactedto by members of a society" (Joralemon 19'~9: 103). From thisperspective, bioethics is just one more ethnoethical system, onerooted in a particular culture,and a particular etbnomedical system,that of biomedicine. Fabrega(1990), for example, has describedthe way 'ethics' has been deployed across cliltures to legitimizecertain healers and healing practices and exc,lude others.

Kleinman has been sharply critical of bioethics, evenas bioethicists have taken steps to engage multiculturalism:"Culture, it would seem, is appropriated ill ethical discourselargely in an outmoded ma1}ner aimed at creating a carica-ture--cultural relativism-that is meant 1,0 act as a foil forcontinuation of a business of moralphillosophy as usual"(1995b: 42). He distinguishes the ethical ~llld the moral. Theethical refers ,to the abstract knowledge of experts, while"moral accounts are the commitments of social participantsin a local world about what is at stake iIJ everyday experi-ence" (I.995b: 45). Kleinman argues that one of the chiefcontributions of anthropology to bioethics is the possibility ofengaging, and bridging, the ethical discolJlfse of experts andthe moral discourse of patients, victims, arid families (1999).When ethnographic materials are granted a place in bioethics,however, it is "a separate and unequal place" (1999: 84).

Criticism, an,d a growing number ofaltemative ap-proaches to bioethics, has emerged from l;vithin and outsidethe field. For many years, there has been a healthy debatewithin the professIon about whether biot:thics has becomean objective critic or handmaiden of biomedicine (see, forexample, Rothman 1991). Feminist contlributors have alsochallenged the field's orthodox approach (see Donchin andPurdy 1999). Narrative ethics has raised the importance ofattending to patient's stories and lived expeliences{see Hunter1991). The many contributions of transcultural nursing havebroadened the view of medical ethics and t:ncouraged a moremulti-cultural perspective (see Doswell a,nd Erlen 1998;Lutzen 1997; Ray 1994): Many authors advocate a socialjustice framework, challenging bioethics 1:0 shift its focus tothe health care system and questions of health equity. Sociolo-gists and others argue that too many bioetllicists focus on thewrong problems --exotic new technologil~S, rare conditionsand scenarios-rather than broader concen.lS about access andequity. Churchill argues that "energy and talent are deflectedfrom major social problems toward issues that affect only afew affiuent individuals" (1999: 266). Sinlilarly, some arguethat bioethics narrow focus on the doctor-patient interactionsand the ethics of individual transactions precludes seriousattention to questions of justice (Daniels, Kennedy, Kawachi1999). More recently, anthropologists and others have applieda Foucauldian approach to bioethics, vie:wing bioethics asa discourse and a set of practices embedded in relations ofpower (Frank and Jones 2003; Hoyer 200:2). Rather than the

by academics in another _discipline, namely philosophy, andimbued with the discourses of law and biomedicine, anthro-pologists have struggled toQe heard in such debates, and havestruggled as well with the ethics of their own participation inbioethics decision-making. A number of anthropologists havededicated themselves to engagement wifu bioethics, even asthey acknowledge both its limitations and the challenges foranthropologists entering the field (see, for example, Marshalland Koenig 1996). While producing a number of studies aboutareas of ethical and moral' debate in biomedicine-organ

transplant, physician disclosure, reproductive technologies,euthanasia-anthropologists have had a much less visiblerole in the application ofbioethics to health care policy andpractice. Before describing my own experience on a bioethicscommittee, 1 will first discuss some of the anthropologicalcritiques of bioethics.

Chief among anthropologists' critiques ofbioethics is itsfocus on individualism and dedication to a set of abstract prin-ciples, such as autonomy and beneficence, over an attention toempirical study and contextual analysis. Rapp, for example,notes that bioethicists have "produced a field of discoursethat is quite consonant with its American cultural roots, andself-confidently unaware of its own sociocultural context"(2000: 44).lfbioethics is unaware of its own cultUral context,many anthropologists have argued, it is equally reluctant toexamine the social context of ethical dilemmas.

Many bioethicists, on the other hand, consider excessiveattention to social and cultural context to be a dangerous kindof relativism, one that may diminish rather than enhance pa-tientrights(MackIin 1998). Beauc~p and Childress begintheir popular textbook, for example, by making the distinc-tion between "normative" and "empirical" moral claims. Thepractice ofbioethics, the authors tell us, is about "the commonmorality," that is, normative moral claims based on abstractprinciples. While culture or community-specific moral claimsmay sometimes appea,r to contradict these abstract principles,they do not form part pf the common morality (2001: 4-5).Anthr9pologists, not s~risingly, have wondered where they,or other social scientists for that matter, might fit into such anapproach. According to Hoffinaster, "Social scientists. ..engagein descriptive ethics wh~ they investigate and interpret theactual moral beliefs, codes, or practices ofa society or culture"(2001: 1). Insisting on a separation between descriptive andnormative ethics, between what "is" and what "ought" to be thecase, is untenable, aecording to Hoffmaster (see also Marshalland Koenig 1996: 353). Bioethics problems are themselves theproducts of specific cultural, political and social environments."Yoked to the abstractions of reason and theory," and ignorantof context, Hoffmaster charges that "[Bioethics] prescinds themessy details and attachments that give our lives meaning andvigor, the nagging contradictions that make us squirm andstruggle, and the social, political, and economic arrangementsthat simultaneously create and constrain us" (2001: 1).

Of her own experiences researching amniocentesis, Rappwrites, "I have been struck byboth the respectful curiosity andphilosophical dismissal that met my insistence on recognizing the

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neutral application of ab~tract principles, a more critical ap-proach would question wIly and how certain dilemmas get cast,and then managed, as "ethical" problems (Hoyer 2002).

In her critique of cancer screening :programs, Kaufert(2000b) notes that she came to the subjec1: as a result ofhav-ing served on a Canadian provincial government committeecharged with planning breast and cervical cancer screeningprograms. Though she does not say how she came to par-ticipate on the committee as an anthropologist, she does saythat the committee was made up primarily of radiologists,oncologists, epidemiologists and bureaucrats, and her articlehighlights the way her own perspective as an anthropologistvaries from that represented by the committee's deliberations.The conversation, she says, focused on a "calculation of risks,mortality and cost-effectiveness" (2000b: 166), while shequestions what effect screening program~; have on women,and the fear and mistrust in their bodies tiley may engender.Kaufert also argues that discussions of patient compliancewith screening were imbued with themes of guilt, fear, moral-ity, and personal responsibility:

Anthropological Contributions:Research and Policy

Listening to these conversations,.I came to see screeningnot simply as a public health measure or an expressionof corporate medicine, but asa philosophical and histori-cal construct reflecting a very particular view of healthand disease, and a very particular perspective on women-and their bodies. I became increasingly iJrterested in theimplications for women of a definition of the female bodyas an object in constant need of monitoring, evaluation andsurveillance, a body for screening. (2000b: 166-7)

Anthropology's traditional reluctance to pass judgementmay inhibit the participation of anthropologists in bioethics(Marshall and Koenig 1996), but not all anthropologists arereluctant to weigh in on policy decisions. Donald Joralemon(2000), for example, has been an outspoken opponent of pro-posals to allow the sale of org~s for transpl~tation. Usingcross-cUltural and historical evidence about the treatment ofthe dead, Joralemon has argued that the free mat:ket approachto organ procurement negates the social functions of treatingthe dead body wi$ respect and ritUal. Joralemon has not onlypresented his arguments in academic journals and books, buthas participated in policy debates through medical confer-ences and as a commentator in the press. Scheper-Hughes hassimilarly taken an advocacy role by investigating the globaltraffic in hurnan organs. In addition to academic publications(see Sch~per-Hughes 2000), she has also launched a websitedevoted to widely disseminating the resUlts of a wealth of researchon the organ trade and promoting a human rights approach to thecommodification of the body (see Organs Watch). Manyanthro-pologists now work in the United States atid Europe, in hospitals,clinics, and research laboratories, followmg new developments inbiotechnology and biomedicine from development to implemen-tation (Rabinow 1996; Heath 1998, Rapp 2000), and the imageof anthropologists as students of exotic others with simpletechnologies m~t surely be fading. Anthropology's attentionto collectivities can and shoUld be presented as an asset ratherthan a hindrance to participation in bioethics discussions. Forexample, mainstream bioethics is paying increasing attentionto the potential harm of genetic research" for racial and ethnicgroups, and searching for ways to include a discussion of suchpotential harms in the cons~nt process (Clayton 1995).

Anthropologists have participated in bioethics ill Qothclinical and policy settings. However, the few accounts of an-thropologists who have served on ethics panels suggest both thenarrow focus and limited participation ofbioethics committees.McBurney (2001), for example, looks at an Institutional EthicsCommittee (IEC) in a Canadian hospital, which was created todeal With ethical problems arising in clinical practice, especiallyaround resuscitation issues. Her own study supports previouswork suggesting that such committees reinforce existing powerstructures and hierarchies within the hospital rather than facilitat-ing a broadly inclusive discussion of ethics. Asking the question"who is nofbeing ~vited to the ethics enterprise?" McBurneyfol!lld that the structure, authority and membership ofthelECexcluded-key players, especially nurses, who after all dealtmost intimately with patients and families. She concluded thatthe committee functioned more to deal with risk management(legal risk) and public relations than with the internal evalua-tion of ethical dilemmas (2001: 195).

Unfortunately for the present discuss,ion, Kaufert doesnot describe how such misgivings found their way into thecommittee's deliberations, if at all. Can such critiques influ-ence public policy andbioethics debates'? Or are they j~tinteresting fodder for anthropological debates? My ownexperience on several ethics and genetic services advisoryboards has caused me to ask similar questions about my ownparticipation in bioethics.

Several anthropologists have used ethnographic tools toexploremotal problems. Lock (2001) describes the "situatedethics" of organ transplantation, demonstrating how pro-foundly culture, religion and historical COI1ltext shape the de'-bates in Japan and North America. Rapp's (2000) research onprenatal genetic counseling shows how deeply "informed con-sent" and "autonomous decision making" can be influencedby class, gender, culture, and religion. Rapp's ethnographyof genetic counseling and testing in action demonstrates thatthe principles of non-directive genetic co1;Lnseling, in whichpatients are presented with supposedly ru~utral "facts" andallowed to m~e decisions consistent with their own valuesand beliefs, is significantly more complicated than the abstractprinciples on which it is based.

Justice and social context figure prominently in thecontributions of anthropologists to the study of organ trans-plant in India. Das stresses the importance of justice andethnography when considering the application ofbioethics inlow-income countries: "[U]nless we can come to grips withthe everyday life within which moral and ethical questionsmay be grounded 'for Glinicians, patients, wId policy-makers,

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there is little use in debating the relevance of bioethics forlow-income countries" (1999: 100). Cohen (1999), in inves-tigating organ selling in India raises the question of how tojudge autonomy and informed consent in a context of severepoverty, chronic indebtedness and gender inequality. Anthro-pologists have often demonstrated the influence of context,political economy, and existing social hierarchies; on ethicaldeliberations. Yet we have struggled to infuse policy-makingwith these factors.

Legislating Genetic Privacy

a hindrance to research and biotech expansion in the state..The debate over gene patents in Oregon roughly mirrored thenational debate. In 1995, when the first g,;:netic privacy lawswere being written, there was intense national debate overthe legitimacy of broad product patents fI)r DNA sequences,especially when granted in absence of a clear identificationof the function of the sequence or its pot(~ntial industrial ap-plication. Scientists and bioethicists debattedthis issue, withclinical geneticists and theirorganizatioru; cautioning againstwidespread patenting (arguing it would lirnit patient access totesting), and research geneticists and private companies (theso called "gene jockeys" in search of disc;:asegenes) arguingin favor of patents as a necessary incentive for the significantinvestInent necessary for new medical breakthroughs. Withno federal action forthcoming, some w:ant;:d to make changesto state laws in order to take a stand against gene patents.

During the deliberations of the GRI\.C, Oregon's onlymedical school announced plans to develop a new majorresearch site that would take advantage of new developmentsin genetic research, and the committee wa:s told repeatedly bypatent attorneys, pharmaceutical representatives ~d OHSUlobbyists that the existing law was bad for 'business and woulddrive lucrative opportunities out of the stalte. Defenders of the"property clause" repeatedly argued 'that the legitimacy offederal patent policies had to be debated irl order to determinethe best way to protect "genetic privacy".

Eventually, a compromise 'oill was drafted by the com-mittee, and subsequently passed by the legislature in 2001.That bill eliminated the property clause, clarified whatmight be considered "anonymous" reseElfch (and thereforeexempt ftom specific informed consent requirements),canddetermined a penalty structure for unlawful disclosures ofgenetic information. The 2001 law also created a secondcommittee, the Advisory Committee on Genetic Researchand Privacy (ACGPR), whose charge was the continued studyand oversight of genetic privacy issues. In a concession to theproponents of the property clause, the law also charged theACGPR with the continued study of gene patenting issues andwhat role the state law might play in shaping those policies.Many of the members of the GRAC, inell11ding myself, havecontinued on as members of the ACGPR, although it shouldbe noted that the second committee has c~xpanded its mem-bership to be more inclusive than the GF:.AC. The ACGPR,for example, includes a nationally reno'wed bioethicist; agenetics counselor, and a representative from the AmericanCivil Liberties Union (ACLU).

My first challenge was finding a voice, literally, on theGRAC. My lack of background in law, me:dicine, or bioethicsimmediately put me at a disadvantage on the committee. Forone thing, I lacked the knowledge of the legal and medicalnomenclature, which was a source of professional authorityfor other members. As a "consumer representative," I lackedthe professional identity of other members as well. I also wasunsure of the label of"health care consum,;:r." Other memberswere there to,rel1resent the interests of their employers or theirprofession. My label was much more vague. Was I there to

Oregon was one of the first states to pass a statute specifi-cally regulating the use and disclosure of genetic test results,and it drew national attentiqn when it became one of onlya few stat~s to declare that a person's genetic informationwas their private property (see Everett 2003). The 1995 lawhas been revised several times since it was initially passed.One of the most significant changes to the law has been theremoval of property language in place of privacy assurancesand specific penalties for the improper use and! or disclosureof genetic information. The 1995 Oregon Genetic PrivacyAct states that "An individual's genetic information is theproperty of the individual," whereas the moqifications tothe law passed in 2001 replace that clause with the"state-ment: "Genetic information is uniquely private and personalinformation that generally should not be collected, retainedor disclosed without the individual's authorization." Thatchange was primarily driven by the medical school (OregonHealth and Sciences University) and the pharmaceutical in-dustry (represented by the Pharniaceutical Researchers andManufacturers of America-PhRMA), who were, concernedthat property rights would complica.te research and cloudintellectual property rights, especially gene patents.

The first committee on which I served, the Genetic Re-search Advisory Committee (GRAC), met from 1999-2000and drafted a bill that was passed in 2001. I was asked toserve on the committee after writing an article in the localnewspaper about my own family's experience with a raregenetic disorder and my opinions about the rights of humansubjects in genetic research. The membership of the GRACwas made up primarily of geneticists, physicians, lawyers, andlobbyists representing a variety of health care ;md researchinterests, including the hospital association, the medicalschool, the Oregon Medical A~sociation, the Oregon Biosci-ences Association, and PhRMA. From the beginning, I feltthat anthropology was relevant to the questions the committeeaddressed-,-,medical privacy, informed consent, gene patent-ing, and the protection of patients and research subj~cts..' Ilearned firsthand, however, how challenging it can be to bringthe perspective of anthropology to such a forum.

Early on in the committee's deliberations it becameclear that the GRAC members were divided between thosewho opposed gene patenting and viewed Oregon's landmarklaw as a way to challenge federal policies, and those whoopposed individual property rights to genetic information as

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represent all people affeqted by genetic conditions? All healthcare consumers? Could my own unique experiences speak tothe concerns of others? The problem of establishing my owncredibility on the committee was made all the more clear t6me early on, as several members of the committee openlyexpressed doubt that "the- public" had anything of value tosay on such a complex issue. If I was ever to escape what afriend of mine so aptly called my status as a "professionalvictim," I was going to have to establish my legitimacy assomething else. But what? ,

1 soon was met by another challenge. It became clear,early on that some members of the committee viewed me as apotential threat to their interests. What would I say about theinstitution where my family received medical care? Was I onthe committee to seek redress for some perceived wrong? Alobbyist from a powerful research concern called me, clearlytryjngto "feel out" my pf}sition. Shortly thereafter, a memberof the committee shared information from my medical historywith another member of the committee as he questioned mymotives for participating. When I confronted him about this,he apologized and assured me it would not happen again. Butbefore I had even had a chance to raise concerns about whatthe committee was not addressing-the nature of informedconsent, a critical view of how powerful business interestswere shaping the debate, the lack of diversity on the com-mittee-I felt compelled to be deferellti~l, conciliatory, lestI be left out of the discussion altog~theL

This, it seems, is the dileIillI1a for many applied medicalanthropologists working in biomedical settings, and undoubt-edly for anthropologists trying to enter bioethics. Scheper-Hughes, in her critique of clinical medical anthropology,asks, "Why, as soon as anthropology enters the clinic, are thebywords suddenly negotiation, caution, tact; that is, when weare not being asked outright to 'remain silent' when our wordsmight be viewed as 'threatening' to the powerful interests ofmedical practitioners?" (1990: 191) The answer, to respond toher somewhat rhetorical question, is probably that but for thatcaution we would not be allowed in the clinic (or the policycommittee) at all. Scheper-Hughes offers an alternative tosuch aJl applied approach, which she argues seeks to tinkerwith a system without ever calling its fundamental assump-tions into question. She suggests the role of the court j ~ster asa model for a "critically applied IIiedical anthropology":

ing political and economic forces" (Baer, Singer, Susser2003: 38) led me to question why the dl::bate of the GRACtook the form that it did so quickly and with so little opposi-tion. All sides seemed to accept that we were engaged in abalancing act between individual privacy., the common goodbrought by research, and economic gro~rth (also perceivedas a common good). How did all medical research andbiotech growth become accepted as universally beneficialand "socially necessary"? Why shou},:! we assume thatthere is always a "cost" to protecting patients and researchsubjects? I wondered. But sitting on an ethics panel made upof "experts" and convened by a state law" I felt powerless touse this perspective to influence the deliberations. I certainlywas not the court jester.

Still, I did rely on my background as an anthropologistto weigh the issues for myself. While I VIas troubled by theextent to which "business interests," and not the rights ofpatients, were behind the move to elimcinate the propertyc1.ause, I was never enamored of the idea of treating DNA,or genetic information, as a kind of personal property. Boththe defenders and the opponents of genl:: patenting seemedto accept the idea that DNA could rightly be treated as prop-erty, and that the question was to ~hom such property rightsshould accrue-the individtial~ who gave their tissue samplesto researchers, or the researchers who "discovered" genesequences in the Jab. Didn't both approa(:hes treat the body,and the products derived from the body, as a commodity? (se~Everett 2003) Didn't this encourage an mstrumental view ofthe body that conflicted with the many :;ocial meanings ofthe body that anthropologists have ideniliied? (see Nettletonand Watson 1.998; Lock and Scheper-HllgheS 1.987; Sharp2000) In the end, I lent my support to the: eliIi1ination of theproperty clause, even though I did not re:lish siding with thepharmaceutical industry on the issue.

while I felt comfortable about the short-term solution ofreplacing property language with privaC)T protections, I haddeeper concerns about what I have called the "genetic privacymovement," which were much harder to address in a policyforum. Without reference to the lived experience of peopleaffected by genetic conditions, or for th~t matter much inputfrom the geneticists and counselors who worked with them,the goals of"genetic privacy" seemed ill-'conceived and some-times contra:~ictory. How can ethical guidelines be craftedwithout an understanding of who we arl~. trying to protect,"what problem we perceive to exist, and how research is likelyto be understood (or not) by potential subjects? Geneforum.org, an Oregon-based organization conlnlitted to facilitatingpublic debate about genetic issues, worked with the committeeto conduct focus groups, phone surveys ~Llld interviews withkey policy-makers, in order to provide a ,context in which tbunderstand how "the problem" (and possible solutions) wereperceived by the public and key stake-hoJders. For the mostpart. however, Geneforum's fIndings we]~e dismissed by thecommittee as unscientific and indicative of the public's igno-rance of the isspes. When Geneforum sponsored a series ofpublic radio programs on genetic privacy, one member of the

The jester, the oppositional intellectual, works at the mar-gins and sometimes {but not necessarily) from the outside,pulling at the loose threads, deconstructing key concepts,looking at the world from a topsy-turvy position in orderto reveal the contradictions, inconsistencies, and breaks inthe fabric of the moral order without necessarily offeringto 'resolve' them. (1990: 191)

Such a role requires, according to Scheper-Hughes, thatthe anthropologist "dis-identify with the interests of conven-tional biomedicine" (1990: 192).

The perspective of Critical Medical Anthropology, which"understands health issues within the context of encompass-

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committee expressed d.oubt at the val~e of the series, saying"talk radio scares me." The exclusion of lay voices in suchdiscussions was troubling. Moreover; the professional/citizendistinction on which such exclusions are based is untenable,especially because in the new era ofmolecu1arm~dicine, weare all potential genetic subjects.

When non-experts did have a voice, it was not as citizensor as potential genetic subjects, but rather as consumers of

(privatized) medicine. This points not only to the COmmer-cialization of both medicine and ethics, but to the fact thatdeliberations over the application of emerging technologiestend to affect the wealthy and the insured more than the poor,minorities, and the uninsured. The legal debates in Oregonraised the important issue of genetic property (to whom doesgenetic iriformation and material belong, and what power dostates have to legislate on that question?), but not the (in myopinion) more critical question about insurance and accessto health care. As anthropologist Kaufert explains, many ofthe privacy issues raised by the new genetics emerge directlyfrom the American system of private health insurance andcommercialized medicine (2000a).

I also came to find the premise of ' 'genetic exceptional-

ism" .troubling. That is, most members of the committee,regardless of their position, accepted uncritically that ge~eticinformation is fundamentally different from other types ofmedical information, and that because of its exceptionalqualities, it must be guarded with special protections. Thethinking goes that because genetic tests can be predictiveof future health (rather than simply diagnostic of presentconditions), and because they have implicatipns for familymembers, genetic information is especially sensitive and re-vealing. However, increasingly such exceptionalism has beenchallenged (Green and Botkin 2003; Murray 1999; Sankar2003). Attempting to prevent discrimination by emphasizingthe presumed sensitivity and importance of genetic informa-tion may well havyan unintended and contradictory effect. AsSwat argu~s, "If genetics determines human developmentto the extent that, as one supporter of genetic exceptionalismwrites, 'genetic make-up is at the he~ of personality' ...thendefects in a person's- genotype appear as defects of the per-son, an association that explains (though it does not justify)stigmatization and discrimination" (2003: 394). Writing inthe Journal of Genetic Counseling, I have similarly arguedthat genetic exceptionalism is not only misleading, but con-tributes ~gerously to genetic determinism. In other words,by treating genetic information as our most personal andintimate information, we merely reinforce the idea that weare our DNA, an association that will more likely increasethe stigma of genetic conditions rather than prevent discrimi-nation (Everett 2004; see also Greely 1998). Reviewing theanthropological literature on genetics and identity, I argut;,"anthropologists. ..demonstrate that the power of genetics as abasis for discrimination is overwhelmingly social. Blueprint,diary, bible, or code-these are all social constructs. How wedescribe and perceive DNA is important and has a real impacton individuals and families" (2004: 287).

While the GRAC was unable to gr:lpple with this ques-tion, its successor, the Advisory Cornmittee on GeneticResearch and Privacy, has begun to question the extent towhich genetic information should be distinguished fromother medical information, and has spent considerable timeinvestigating whether existing state and federal medical pri-vacy laws mi~ht already provide adequate protection againstgenetic discrimination.

The ACGPR, unlike its predecessor, also took some timeto consider how racial and ethnic groups might be affectedby genetic research. It also has more direct involvement fromgenetics counselors and bioethicists thatlits predecessor. Its2003 report to the Oregon legislature irlcludes a brief sum-mary of a pilot program designed to elicit reflections fromAfrican American faith communities on ethical issues andgenetic testmg (ACGPR 2003: 25-26). One member of thecommittee also circulated an article on 'biocolonialism' andthe efforts of some tribal councils to ban DNA research in theirtribes (see Sullivan 2003). While there w~lS general agreementon the importance of these perspectives, no direct action wa.staken or recommended, Like the GRAC,the ACGPR had nominority representatives, nor a member representing multi-cultural interests. While anthropologists should not presunieto represent minority interests on such etJrics panels, they canpoint out the lack of diversity in group membership and callfor more inclusive deliberations.

I recently ended my service on the ACGPR followinga protracted and heated debate about further changes toOregon's genetic ~rivacy law. Some m~~mbers of the com-mittee, most vocally a clinical geneticist, argued for the needto expand the definition of "genetic information" to includefamily JIistory. Current state law defines genetic informationvery narrowly as the result of a test o&DNA. Proponents ofthis change argued that potential patients were reluctant toeven discuss genetic testing for fear-oflosing their insurance.Although I shared some of the same conc~erns that insurancecompanies may use family history in wl~ighing the relativerisk of potential and actual customers, J[ had several reser-vations about the proposal. First, we h;ave little evidence,especially in the state of Oregon, that ~:uch discriminationis occurring on any. scale. Second. studies that have tried todetermine the effect of insurance concerns on testing decisionshave indicated that other factors weigh more heavily thandiscrimination fears (see for example Hilll and Rich 2000).Third, and more fundamentally, I was skeptical that legisla-tion of any kind can address our anxieties abo\lt medical andinsurance systems that are fundamentally based on exclusions,especially when that legislation is confined to. the regulationof genetic information, however broadly defined.

As a critical medical anthropologist., I have often won-dered what the effect of genetic privacy laws will be. Willthey prevent discrimination? Allay fears:' Perhaps what theyreally do is pave the way for widespread genetic screening.In their Foucauldian analysis ofbioethics, Frank and Jones(2003) view th,e field as a technology that makes certainsubjectivities possible. Applied to the recent explosion of

YOLo 65, NO. I, SPRING 2006

genetic lmowledge, this could mean that detennining howto ethically obtain and disseminate genetic infornlation (thetask of genetic privacy laws) serves not to limit the pursuit ofgenetic testing, but rather enables it through the creation ofnew subjects (who are at once protected and subjected to newforms of surveillance) for research and clinical testing.

One can certainly find people who will say that they areafraid to be tested for fear of losing their job or their insur-ance, but is this the failure of legal protections, or is it ratherthe result of media hype, misinformation and the limits ofprivate medicine? I suspect the latter. Without hearing fromthose we are trying to protect, and without looking at thesequestions in context, I ~gued, we have not identified what"problem" we are trying to solve. Moreover, Cultural anxi-eties around emerging technologies, however well founded,cannot simply be legislated away. I even expressed concernthat further legislation could increase the public's anxietyby further reinforcing the importance of genetic; informationas especially revealing and potentially dangerous. It wassugge~ted that this stance was not consistent with my roleas the "consumer representative," wno should be arguingfor the broadest possible protections for consumer healthinformation. I had to recognize that this was a fair criticism,and that. my reservations came more from my perspective asa critical anthropologist and less from my experien,ce as aconsumer of genetic services. I decided it was time to giveup my role as consumer representative, and play the role ofoutside anthropologist.

medical roles and accept medicals~rvices" (2003: 185). Ap-plied to policy-making, we might say that anthropologistsshould have little faith in reforming bioethic:s, at least in thesense of making it less embroiled in relations of power, butneither should we retreat from its truth gaml~s, with all theirbenefits and burdens.

To begin with, we cannot avoid taking a moral stanceon importaQt issues. Our comparative per:,pective shouldenhance our position and argument, rather than force us todefer to an ambiguous relativi~m. Applied :mthropologists,with their wealth of experience a~ encouragin!~ "participatory"planning and policy-making, can also be a voice for a moreinclusive (and less elitist) bioethics. Bioetlrics committeesmay- not aUow gadflies in their midst, but I believe thereare ways for anthropologists to bring critic~u and reflectiveperspectives to health policy deliberations.

With our understanding of human diversity, we cancontinue to provide-a counterpoint to biologi(:al determinism.By familiarizing ourselves and others with the cultUral andbiological anthropology of human genetics, we can questionthe assumption on which so much genetics..related policiesare based, that "everything is genetic" and that DNA holdsessential and immutable truths about individuals and theirfamilies.

We may indeed need to restrain the urgc to launch into alectUre on anthropology while serving on etlrics committees,but we can surely find other ways to deliver a critical messagebeyond the confines of the discipline. ThrOllgh publicationsin interdisciplinary journals, media interviews and publictestimony, and publications that reach a broad audience,anthrQPologists can and should find a more: effective voicein public decision making. We may not al1~ays succeed atplaying the court jester, but we can and should find a seat(and a voice) at the policy table.

No Shirt, No Shoes, No Service: A RealityCheck for the 'Barefoot Anthropologist'

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