November-December 200038 H A S T I N G S C E N T E R R E P O R T

Dena S. Davis, “Groups, Communities, and Contested Identities inGenetic Research,” Hastings Center Report 30, no. 6 (2000): 38-45.

Groups, Communities,and ContestedIdentitiesin Genetic Research

Obtaining community consent before

conducting genetic research seems to be a

way of ensuring that a whole community is

not harmed against its wishes—that all Jews,

or all African Americans, or all Hutterites are

not forced to learn things about themselves

they would rather not know, or are not

forced into identities they would rather not

have. Unfortunately, there are

insurmountable problems both in identifying

the right representatives of the community

and in obtaining their consent.

b y D e n a S . D a v i s Research in medicine generally and in geneticsespecially increasingly focuses on groups, orso-called communities, of people. As objects

of research we are increasingly aware of people asmembers of groups—Ashkenazi Jews, women, inner-city dwellers—whose health status is powerfully in-fluenced by that membership. As subjects of research,as our partners in the research adventure,1 we in-creasingly identify people by their group member-ship. This is in part due to the nature of genetics it-self, which tends to be interested in shared character-istics among families and larger groups, and also inpart to our increased cultural sensitivity and to therise of “identity politics.” Genetic research has a pow-erful potential for harm, most likely to those margin-alized groups already stigmatized and disadvantagedon the basis of supposed racial characteristics. NativeAmericans might be especially wary of research thathighlights the incidence of alcoholism in their com-munities, given the prevailing stereotype of the“drunken Indian.”2 Jews, targeted during the Holo-caust for destruction as a “cancer” that would “in-fect” and destroy the otherwise healthy Aryan “race,”might well be uneasy about research that suggests tothe popular mind that they are inbred or particularlyprone to genetic disease. In response to these con-cerns, it is becoming commonplace to insist ongroup participation in planning genetic research;3 wenow say, for example, that we need to involve mem-

image not licenced for online use

November-December 2000

bers of the “Ashkenazi Jewish com-munity” in planning screening pro-grams for Tay-Sachs or BrCa1 muta-tions, which occur more frequently inthat group, or we assume the necessi-ty of inviting at least one member ofthe “d/Deaf community” to a work-ing group on genetic causes of hear-ing disorders.

In a sense, this growing concernabout “group implications” of geneticresearch parallels our existing aware-ness that genetic research, testing,and counseling all have family impli-cations that are distinct from otherforms of medical research and inter-vention. Finding out, for example,that one’s mother died of Hunting-ton disease is a very different experi-ence from discovering that she diedof tuberculosis, or even of syphilis,traumatic as the latter might be. Theknowledge that a parent had HD tellsme something very powerful andscary about myself and my siblings:we are each at 50 percent risk, andour children at 25 percent risk.

There has been a good deal of dis-cussion about the meaning of genetictesting for families. The consensusstill seems to be that the privacy andautonomy of the individual will berespected. For example, an adult whowishes to be tested for a disease willbe accommodated even if her siblingsobject that they would prefer to re-main in ignorance. For the same rea-sons, relatives who do not wish toparticipate in the counseling and test-ing process are not coerced to providetheir DNA, even if it would greatlyhelp other family members. But thereality of genetic knowledge, and offamilies, forces us to realize that ab-solute respect for privacy and autono-my in this context will often be be-yond our grasp, and that thoughtfulpractice in genetic counseling and re-search must take families seriously. Adramatic example involves a pair ofidentical twins at risk for HD, onlyone of whom wanted to be tested.She promised never to tell her twinthe results, but once she found out“the information spread quicklythrough the entire family,” and of

course the twin who preferred not toknow was informed in spite of her-self. Catherine Hayes, herself a mem-ber of a family at risk for HD, com-ments that family counseling wouldhave been a useful venue in which toresolve these issues before testing, andnotes that “When information wasgiven to one twin, the other irretriev-ably lost the freedom to decide.” Shemight also have noted that the sec-ond twin, and her children, in-evitably bore the same potential bur-dens of stigma and discrimination asdid the sister who wanted to know,but in this case without their con-sent.4

By the same token, genetic knowl-edge about, for example, AshkenaziJews, obtained from a small numberof people, has implications for every-one in the larger group, but the bur-dens (with or without the benefits)devolve on them without their con-sent. Rabbi Moshe Tendler, a biolo-gist and ethicist, objects to the recentfocus on Ashkenazi Jews in geneticresearch. “Why are you focusing onlyon the Ashkenazi Jews, giving theworld the impression that we have allthe bad genes? . . . I walk around,they may not know my name, butI’ve been identified as a member ofthe Ashkenazi Jewish communitywho carries bad genes. They had noright to do that to me.”5

As Henry Greely has written, the“dominant paradigm” for control ofresearch has been the relationship be-tween the government (as funder andas regulator) and the individual (asresearch subject), ignoring almost en-tirely “the groups between.”6 Thusthoughtful attention to issues of risk,benefits, and consent requires aware-ness of the larger genetic group.

In this laudable new concern,however, we have largely ignored thenecessity to think carefully about themeaning and experience of commu-nity membership. Although the term“community,” in order to be useful,ought to carry some implications ofshared goals, shared experiences, or atleast of communication amongmembers of the community, that is

not necessarily the case. Often theword “community” is simply anotherway of saying “group,” although it isallowed to retain some of its sublimi-nally positive force.

A particularly odd example oc-curred in a recent article subtitled“Why We Must Include CommunityValues in the Design and Conduct ofClinical Research.”7 This articleclaims that “the next challenge inbioethics is to move beyond individ-ual patient’s [sic] rights in order torepresent the community of patients’rights”; it considers “the communityof patients and their representatives,”the “community of researchers andindustry,” and “the community of in-vestigators.” It is hard to see how anyof these groups can constitute a com-munity in a meaningful sense of theword, however. The “patients” in thisarticle are primarily those withAlzheimer disease, which strikes peo-ple across gender, culture, and classlines. Once people are in the throes ofAD, they are typically not able to en-gage in the kinds of activities inwhich they could make commoncause with others with whom theyshare a diagnosis. High-minded callsfor “involving the community” can’thelp but sound good, but in thispaper I argue that more thoughtabout how communities are consti-tuted is required if our calls for com-munity involvement are actually tobe consonant with our ethical goals.To quote Joseph Featherstone, “Likedemocracy the word community willhave to be dipped in acid to washaway sentimental and misleading en-crustations.”8

Reasons for Involving theCommunity

The reasons for involving affected“communities” in our research

plans and projects include at least thefollowing:

Group involvement from the be-ginning allays suspicion and increasesparticipation from members of thegroup. For example, Alice Martinand others in her project have had

H A S T I N G S C E N T E R R E P O R T 39

November-December 200040 H A S T I N G S C E N T E R R E P O R T

great success over many decadesdoing genetic research in some Hut-terite communities, described by thescientists as a “large religiousisolate.”9 The Hutterites, Anabaptistswho fled to the New World in thesecond half of the 19th century, liverural lives in more than 200 coloniesspread over the United States andCanada. Because they live, eat, andwork communally, environmentalconfounders are kept to a minimum,while their practice of inbreedingmakes them genetically interesting.Martin believes she had success withthe Hutterites because she under-stood how the communities wereconstituted before she “barged in,”she made contact first with the recog-nized community authorities (in thiscase the ministers), and she was re-spectful of Hutterite conventionsabout dress, gender separation, andso on.10

Members of the affected groupprobably have knowledge and accesslacking to researchers that will in-crease the efficacy and likelihood ofsuccess of the proposed research.Thus part of the rationale for the newcenter for research on the genetics ofdiseases that disproportionately af-fects African Americans, a joint effortbetween historically black HowardUniversity and the National HumanGenome Research Institute, is that aninstitution perceived by the blackcommunity as trustworthy will havebetter access to that community andthus a better chance of success. (Ofcourse, that trust can backfire and bedetrimental to the community, as thenotorious Tuskegee experimentshowed.11)

“Respect for persons,” a canon ofresearch ethics, requires not only re-spect for the autonomy of the indi-vidual research subject, but also forthe group under investigation. With-out some measure of respect for the“group,” the interests of individualsthemselves will not be met. Individu-als have interests that they can protectonly through group action, and indi-viduals have interests in the well-being of groups with which they

identify. Thus African Americans as agroup should have a role in planningresearch on, say, sickle cell disease, be-cause the risks and benefits of that re-search have an impact on the entirecommunity in ways that interactwith, but are not identical to, the im-pact on individual African Ameri-cans. Further, involving the group inresearch planning enhances thegroup’s self-determination by givingthem a role in shaping the research.Individual research subjects, in con-trast, can only say “yes” or “no” toparticipating in the project beforethem; they can rarely change the pro-ject or argue effectively that the pro-ject ought not to exist at all. To quoteGreely, “It is the group’s collective au-tonomy that is challenged if re-searchers, with the informed consentof only a few individuals in thegroup, can probe for informationabout the whole group.”12 I am notsure that the concept of “collectiveautonomy” is not an oxymoron, anissue this essay cannot take the spaceto develop. But in any case, it is pos-sible to recast this argument by sayingthat when research on Jones yields in-formation that says just as muchabout Smith and Parker, at the veryleast Smith and Parker ought to havea chance to make their feelingsknown. Further, when Jones is decid-ing whether or not to participate,Smith and Parker’s perspectives maybe relevant to her decision, especiallyif they all share a powerful groupidentity, such as membership in acommon race or religion.

Because these reasons are impor-tant, it is necessary to think clearlyabout groups, communities, and col-lective identities in the context of ge-netic medicine and research.

Who Belongs to the Group?

Christine Grady notes that the de-finition of community is com-

plex and “loosely used,” but alwaysincludes some concept of “a group oraggregate of people who interact witheach other, are interdependent, andhave something in common (whether

it be ancestry, place of inhabitancy,culture, behaviors, or special inter-ests), and who understand or definethemselves to some extent as belong-ing to this group.”13 There are manydifferent ways in which people can bemembers of a community. I am re-minded of friends of mine, the Bak-ers, a white couple who have one bio-logical child and one adopted child,an African American daughter namedMarnie. During Marnie’s freshmanyear at Smith, the college was plaguedby a number of racist incidents. Theparents of the black students called ameeting. My friends asked Marnie ifshe wanted to attend. Marnie wasn’tinterested, but told her parents theycould go without her if they wished.When the Bakers entered the meet-ing room, they were greeted by thebemused stares of the other partici-pants (all black). The Bakers ex-plained, “We have a black daughter atSmith.” Their membership in the rel-evant group was acknowledged, andthey joined the meeting, but theytold me later that they still felt some-what out of place. One of the mainconcerns of the other parents wasthat their daughters have sufficientopportunities to mix with membersof nearby black fraternities, notsomething the leftist Bakers had evergiven a thought to.

Here are at least some ways (prob-ably not an exhaustive list) in whichpeople can be members of a racial,ethnic, or genetically identified group:

• genetic identity, such as carryinggenes associated with AshkenaziJews;14

• ethnic or cultural identity, suchas self-proclaimed membership in thecommunity, affiliation with culturalorganizations, speaking a certain lan-guage (Yiddish, Cree, or ASL, for ex-ample), or cooking certain foods;

• religious identity, such as mem-bership in a Sephardic Jewish syna-gogue;

• stakeholder identity, such asbeing the parent, spouse, or teacherof a member of the group;

November-December 2000 H A S T I N G S C E N T E R R E P O R T 41

• legal identity, such as recognizedmembership in a Native Americantribe;

• shared disease experience—“breast cancer survivors,” for exam-ple—or shared risk for a genetic dis-ease. When sociologist Barbara KatzRothman described researcher NancyWexler’s entrée into the Venezuelanarea around Lake Maracaibo, hometo a huge extended family at greatrisk for Huntington disease, shewrote that Wexler “display[ed] herown biopsy scar as proof of her mem-bership in the community at risk.”15

Membership in one of these cate-gories is not necessarily membershipin a community. It is easy to imaginesomeone with the genetic identity ofan Ashkenazic Jew who has no ties tothe group and shares few of its valuesor concerns, while a person adoptedinto an Ashkenazic family at birthmight exhibit robust membership inthat community in every sense butthe genetic. In the context of geneticresearch, it is the first person whomwe want as our subject, but the sec-ond person who has (arguably)stronger claims to be part of the plan-ning process.

My friends the Bakers, by virtueof their African-American daughter,are stakeholders in that group. Theirconcerns for the harm that could becaused by poorly conceived programsin genetic screening or research (as inthe sickle cell disease debacle) are asstrong as those of anyone who isblack. It is their daughter (and theirgrandchildren) on whom that harmwill be visited. If Marnie were aminor and a potential subject of a re-search project looking at some genet-ic aspect of the black population, theBakers would be as committed as anyblack parent could be to ensuringthat the research did not harmAfrican Americans (although theymight be less savvy about what thoseharms could be). As Rothman, her-self the adoptive parent of a blackdaughter, tells it: “A Jew, a woman, afeminist, passingly disabled, a mem-ber of an interracial family, a nursingmother—I have a thousand identi-

ties. They’re like hooks that stick outall over me, catching strangers andfinding connections” (p. 237).

Contested Identities andValues within Groups

Sharing a genetic or physical char-acteristic (or even an ethnic her-

itage) does not a community make.There are deep conflicts about basicissues within some of these so-called“communities,” for example, be-tween “deaf” people and “Deaf peo-ple,” where the latter identify with“Deaf pride” and “Deaf culture” andmay view themselves as a linguisticminority rather than as people with adisability.16

The connexin 26 mutationthrows light on some implications ofthis division. The Cx26 mutation,

discovered in the last year, accountsfor about 50 percent of hereditary,nonsyndromic hearing loss. It is themost common form of autosomal re-cessive deafness known, with a carrierrate in the general population esti-mated at almost 3 percent.17 The au-thors of the 1999 study conclude thatnewborns whose hearing loss hasbeen discovered by conventional testsshould be tested for the mutation,and that this testing “will help definea group [that will] require aggressivelanguage intervention (many of thesepatients will be candidates forcochlear implants)” (p. 546). It iseasy to suggest that this researchwould have gained ethical credibilityhad members of the “deaf communi-ty” been asked to participate early on,but then the question arises, whichdeaf community? The most political-ly visible group of nonhearing peopleare those who consider themselvesDeaf or DEAF. They do not considerthemselves disabled, are generally op-

posed to cochlear implants and to ag-gressive oral training, and identifythemselves as members of a linguisticminority.18 Efforts to decrease thenumbers of deaf children born or tofit deaf youngsters with cochlear im-plants are seen as attacks on the veryexistence and survival of their cul-ture;19 by that logic, it is not surpris-ing that cochlear implants are consid-ered genocide.20 In fact, from the per-spective of Deaf culture, the mainvalue of the Cx26 discovery may beto enable Deaf couples more easily toensure that they have only deaf chil-dren.21 However, there are also manynonhearing persons who do notadopt that view, and who are notconsidered, by themselves or by Deafpeople, part of the Deaf community.

To add another dimension to thecomplexity, most nonhearing chil-

dren are born into hearing families.Those families, while trying to dowhat is best for their child, are alsostruggling with the challenge of howto mediate between their own cultureand the Deaf culture that is claimingtheir child as a potential member.Robert Crouch, arguing against theuse of cochlear implants, calls it “anintervention that can determinecommunity membership.”22 In mostcases, parents of one culture havechildren of that same culture, al-though the children may leave asadults. This is not true of most deafpeople. If parents of nonhearing chil-dren elect to send them to schoolsthat concentrate on Sign rather thanon training the children to commu-nicate orally, then they are also en-rolling their children in a “robust”and “different” culture, with differentbeliefs, attitudes, and rules of behav-ior from that of the mainstream cul-ture.23 And as immigrant families inthe United States have been discover-

There are many nonhearing persons who are not

considered, by themselves or by Deaf people,

part of the Deaf community.

November-December 200042 H A S T I N G S C E N T E R R E P O R T

ing for generations, in a tug betweenfamily values and those of the sur-rounding peer culture, the latter al-most always wins.

Therefore one cannot speakquickly about inviting participationfrom “the deaf community” (orshould I say “the Deaf community”?)without taking seriously its manyfacets. Attempting to capture thesemany slices of the deaf/Deaf commu-nity, a recent working group on Cx26recommends “[t]he inclusion of indi-viduals with hearing impairment andindividuals who are deaf as well as re-lated organizations representing thespectrum of involved communities ofdeaf or hearing impaired people inthe formulation and establishment ofguidelines and future recommenda-tions regarding genetic testing.”24

Another problem, perhaps un-avoidable, is that “community repre-sentation” tends to be invited from orinitiated by organized, sometimesself-proclaimed, spokespersons of therelevant group. This may privilegethose points of view in which com-munity cohesion and certain kinds ofgroup identity are of primary value.While culturally Deaf persons aremore likely to be politically visibleand well organized, and thus the ob-vious “representatives” of nonhearingpersons, research shows that, unsur-prisingly, their views on genetics arelikely to differ sharply from those ofdeaf people who do not identify as acultural minority, so their views arenot likely to be “representative” of thegroup as a whole.25 Ought we also tosolicit the views of people who areless politically vocal? Does the answerto that depend in part on whethertheir lack of political presence is vol-untary? If 10 percent of an ethnicgroup claims to speak for the entirety,is it the responsibility of the re-searchers to go after the unaffiliated90 percent?26

Native Americans may be anotherexample of this problem. Some Na-tive Americans have objected to par-ticipating in biodiversity research.27

Since Native Americans have a num-ber of legally constituted tribal gov-

ernments, which one working groupcalls “culturally appropriate authori-ties,” it is—at least at first glance—easier to consult with Native Ameri-cans than with, for example, IrishAmericans, who are scattered and in-termarried all over the United Statesand have no obvious spokespersons.28

On the other hand, fewer than half ofNative Americans live on reserva-tions,29 and the nexus between livingon the reservation, being “enrolled”in the tribe, and being able to vote inthe tribal government varies greatlyamong tribes. It is reasonable to hy-pothesize that people living on reser-vations and active in tribal govern-ments value certain kinds of Native-American identity, cohesion, and vis-ibility, which may engender attitudestoward genetic research not shared bythe majority of Native Americans.

Of course, this does not necessari-ly doom the research, nor should re-searchers use it as an excuse to ignorethe necessity to involve the officiallyconstituted tribal leadership. But itdoes raise questions. For example, ifresearchers wish to study a large pop-ulation of Native Americans locatedin a particular city, and the membersof that population are interested inparticipation but are not enrolled in atribe nor permitted to vote in itscouncils, should the researchers seekconsent from the official tribal gov-ernment and give it “veto” powerover these city-dwellers’ informed de-cision about whether to participate?This seems to be the thrust of someof the recent literature, and yet it goesagainst our ethical tradition of indi-vidual consent and refusal, especiallyif the group subject to the group vetois not enfranchised to vote in the trib-al government. (Of course, I do notmean to ignore the fact that individu-als may well want to take perceivedrisks to the group as a whole into ac-count as they make their own deci-sions, and for that reason, knowinghow “culturally appropriate authori-ties” view the research may be an im-portant part of their consentprocess.30)

One Jewish group, on the otherhand, reacted with irritation to thethought that some form of commu-nity consent was appropriate beforebeginning research into genetic dis-eases associated with Jewish people.Signators of this statement, preparedby the American Jewish Congress,pointed out that “throughout Ameri-can history Jews have insisted thatthey be dealt with as individuals, notas some corporate body as in me-dieval Europe.” Further, they notedthat the concept of community in-volvement would have to solve knot-ty problems of representation fromthe major streams of religious Ju-daism as well as from secular Jews,and it would have to decide how dis-senting opinions should be weight-ed.31 As the saying goes, “Two Jews,three opinions.”

The Problem of MoralRelativism

Talk of “culturally appropriate au-thorities” brings us to the diffi-

cult issue of moral relativism. In thiscountry, as ethicists rarely tire of re-marking, the reigning ethical modelis that of Enlightenment individual-ism; the individual’s freedom tochoose whether to participate in re-search is a paramount goal and valueof ethically sound medical and scien-tific practice. Federal regulations re-quire the informed consent of com-petent individual adults but say noth-ing about the involvement of fami-lies, much less communities.

For some years now, ethicists havedebated the relevance of this individ-ualist standard for research conduct-ed abroad, often in cultures in whichthe individual is much less importantthan the family or the community.Should we impose our Western stan-dard on those cultures by requiringindividual consent in those contexts,even if the indigenous practice is tohave the head person in each com-munity make those decisions?32

Philosopher Martha Nussbaum isworth quoting at length here; al-though she is speaking specifically

November-December 2000 H A S T I N G S C E N T E R R E P O R T 43

about issues of women in the devel-oping world, her remarks applyequally to consent to participate inresearch:

On the one hand, it seems impos-sible to deny that traditions perpe-trate injustice against women inmany fundamental ways, touch-ing on some of the most centralelements of a human being’s qual-ity of life—health, education, po-litical liberty and participation,employment, self-respect, and lifeitself. On the other hand, hastyjudgements that a tradition insome distant part of the world ismorally retrograde are familiarlegacies of colonialism and impe-rialism, and are correctly regardedwith suspicion by sensitivethinkers in the contemporaryworld. To say that a practice en-dorsed by tradition is bad is to riskerring by imposing one’s own wayon others who surely have theirown ideas of what is right andgood. To say that a practice is allright wherever local tradition en-dorses it as right and good is torisk erring by withholding criticaljudgement where real evil and realoppression are surely present. Toavoid the whole issue because thematter of proper judgement is sofiendishly difficult is tempting,but perhaps the worst option ofall.33

If that last sentence is correct, we arefortunate that federal regulations andinternational agreements on researchwith human subjects force us to con-front the difficult issue of what con-stitutes informed, voluntary consent.

Some of these same issues arisewhen doing genetic research thataims to be “culturally sensitive.” Noone has suggested that the group’s ac-ceptance of a project be allowed tooverride the individual’s refusal,34 butsome do call for allowing communityrefusal to act as a veto to the individ-ual.35 What if the culturally appropri-ate authority is a council of leaderswho systematically disenfranchisesome members of the group because

of their sex or skin color or someother marker? If it is ethically wrongfor scientists to conduct research onAfrican Americans without theirconsent and participation, or to ex-clude them from research without agood reason, why is it not ethicallywrong for scientists to conduct (orforgo) research on women in a groupwhose “culturally appropriate au-thority” is solely in the hands of men?I agree with Susan Moller Okin that“[W]e . . . have been too quick to as-sume that feminism and multicultur-alism are both good things which areeasily reconciled. . . . [T]here is con-siderable likelihood of tension be-tween them—more precisely, be-tween feminism and a multicultural-ist commitment to group rights forminority cultures.”36 Or what about

the small number of hearing im-paired students at Gallaudet Univer-sity who choose to use cochlear im-plants and who are subjected to greatpeer pressure to remove them?37

Their voices might well be lost in a“culturally sensitive” process thatbegan by inviting campus leaders todiscuss a proposed research protocolon the efficacy of implants.

Let me give one more example toillustrate this point. In her descrip-tion of Hutterite communities in theUnited States, Alice Walker observesthat they eschew abortion and birthcontrol. From marriage untilmenopause, women are usually ei-ther pregnant or lactating; familiesrun to more than ten children. Walk-er said that these women “jump atany reason” to have a hysterectomy.Walker also noted that the decision-maker in each community, andtherefore the person with whom theresearchers dealt, was the (male) min-ister. Finally, Walker said that inorder to ensure that the research pro-

vide some tangible benefit to the par-ticipants, the Hutterites were askedin what ways the researchers couldhelp them, and various clinics forspecific health problems were setup.38 Now, if we put all these facts to-gether, it is reasonable to inquirewhether, if the women in this com-munity were dealt with as individualsand asked directly what kind of ben-efits they would find useful, theymight have broached the topic ofcontraception or tubal ligation,which are less risky to their healththan hysterectomy. Okin again: “Inthe case of a more patriarchal minor-ity culture in the context of a less pa-triarchal majority culture, no argu-ment can be made on the basis ofself-respect or freedom that the fe-male members of the culture have a

clear interest in its preservation. In-deed, they might be much better offif the culture into which they wereborn were either to become extinct(so that its members would be inte-grated into the less sexist surround-ing culture) or, preferably, be encour-aged to alter itself so as to reinforcethe equality of women.”39

Respecting CulturesAppropriately

To argue against “community in-volvement” is almost as hard as

arguing against motherhood andapple pie. Community is one of themost evocative terms of the lastdecade, in large part because itpromises attentiveness to aspects ofhuman life that some commentatorsthink were given short shrift in theearly days of bioethics. But if we seri-ously want to use some form of com-munity dialogue as part of the con-sent process in research, we need tolook closely at what we mean by the

These women “jump at any reason” to have a

hysterectomy, but the decisionmaker in each

community was the (male) minister.

term. Assuming that people belongto certain “communities” simply be-cause they share certain characteris-tics is as inattentive to the reality ofhuman living as is assuming that theylive in a world where they take ac-count only of themselves.

Furthermore, even when peopleare unequivocally members of certaincommunities, we need to rememberthat communities and cultures arehardly univocal. Within any commu-nity there are almost certainly sub-groups of people who share some butnot all interests and values of the ma-jority. Therefore, even if we were toagree with Charles Weijer that thethree principles of research ethics(beneficence, distributive justice, re-spect for persons) need to be updatedto include a fourth principle of re-spect for communities,40 it would bequite difficult to know what thatmeans. Does “respecting a communi-ty” mean deference to its “legitimatepolitical authority” (p. 510) even ifonly the males in the communityvote? This presses heavily on themeaning of the word legitimate. Itmay well be that deference to the ac-cepted political authority in a partic-ular group conflicts with the ethicalprinciple of respect for persons, espe-cially as, more often than not, “grouprights strengthen dominant sub-groups within each culture and privi-lege conservative interpretations ofculture over reformative and innova-tive ones.”41

Thus despite the attractions of thecall for community consent for ge-netic research, I conclude that it is anotion too deeply flawed to be giveneffect. In the first place, there is toolittle overlap between genetic identityand cultural or group identity. Sec-ond, when the relevant identities docohere we are likely to find commu-nities in which deference to “legiti-mate authority” will tend to obscurethe differing interests of the less pow-erful within the group, or to enshrinea static, conservative view of the cul-ture.

This does not mean that there areno appropriate ways in which re-

searchers can respect the cultureswith which they work and acknowl-edge the importance of group inter-ests to many of the individuals whomthey wish to enroll as subjects. AsJames Childress has said, true respectfor persons includes attention to theways in which they are situated in“time and community.”42 Thus whendiscussing risks and benefits with in-dividuals whom one hopes to enrollin a research project, the risks andbenefits to the community or com-munities with which the person iden-tifies should be an important ele-ment. It would be arrogant for the re-searchers themselves to claim to un-derstand those risks and benefitswithout significant input from mem-bers of the relevant community (whomay not be adequately represented bythose in authority). But even withinthe most traditional and isolated ofcommunities, a person still has multi-ple identities based on, for example,age, gender, and profession. Only theindividual can decide how her valueswill adjudicate among the manycommunities to which she belongs.

Acknowledgments

Thanks to the many colleagues whocommented on earlier drafts of thispaper, especially Ingrid Burger, MarionDanis, Joseph DeMarco, EzekielEmanuel, Eric Juengst, Laura Martin,Benjamin Wilfond, and all my col-leagues during my sabbatical year at theNational Institutes of Health.

References

1. R. Veatch, The Patient as Partner: ATheory of Human-Experimentation Ethics(Bloomington: Indiana University Press,1987).

2. F. Butterfield, “Indians Are Crime Vic-tims at Rate Above U.S. Average,” New YorkTimes, 15 February 1999.

3. M.W. Foster, A.J. Eisenbraun, andT.H. Carter, “Communal Discourse as aSupplement to Informed Consent for Ge-netic Research,” Nature Genetics 17 (1997):277-79; North American Regional Com-mittee of the Human Genome DiversityProject, “Proposed Model Ethical Protocolfor Collecting DNA Samples,” HoustonLaw Review 33, no. 5 (1997): 1431-73.

4. C.V. Hayes, “Genetic Testing forHuntington’s Disease—A Family Issue,”

NEJM 327 (1992): 1449-51.5. Interview on National Public Radio,

“Morning Edition,” 6 May 1999.6. H.T. Greely, “The Control of Genetic

Research: Involving the ‘Groups Between,’”Houston Law Review 33 (1997): 1397-430.

7. J. Karlawish, “Building Right Reasonin the Republic of Science: Why We MustInclude Community Values in the Designand Conduct of Clinical Research,”PennBioethics 5, no. 2 (1998): 1.

8. J. Featherstone, “It Just Ain’t Fair: TheEthics of Health Care for African Ameri-cans,” in It Just Ain’t Fair. The Ethics ofHealth Care for African Americans, ed. Dulaand Goering (Westport, Conn.: Praeger,1994), p. 262-63. I am indebted to Char-lene A. Galarneau for this quotation.

9. A.O. Martin et al., “Genetics of Neo-plasia in a Human Isolate,” Genetic and En-vironmental Factors in Experimental andHuman Cancer, ed. H.V. Gelboin et al.,(Tokyo: Science Society Press, 1980), pp.291-302.

10. A.O. Martin, Presentation at “An-thropology, Genetic Diversity, and EthicsWorkshop,” University of Wisconsin atMilwaukee, 12 February 1999.

11. C. Royale, Panelist, “Anthropology,Genetic Diversity, and Ethics Workshop,”University of Wisconsin at Milwaukee, 12February 1999.

12. See ref. 6, Greely, “The Control ofGenetic Research,” p. 1412.

13. C. Grady, The Search for an AIDSVaccine: Ethical Issues in the Developmentand Testing of a Preventive HIV Vaccine(Bloomington: Indiana University Press,1995), p. 78.

14. G. Livshits, R.R. Sokal, and E.Kobyliansky, “Genetic Affinities of JewishPopulations,” American Journal of HumanGenetics 49 (1991): 131-46.

15. B.K. Rothman, Genetic Maps andHuman Imaginations: The Limits of Sciencein Understanding Who We Are (New York:W.W. Norton & Company, 1998), p. 124.

16. B.P. Tucker, “Deaf Culture, CochlearImplants, and Elective Disability,” HastingsCenter Report 28, no. 4 (1998): 6-14; D.S.Davis, “Genetic Dilemmas and the Child’sRight to an Open Future,” Hastings CenterReport 27, no. 2 (1997): 7-15.

17. E.S. Cohn et al., “Clinical Studies ofFamilies with Hearing Loss Attributable toMutations in the connexin 26 Gene(GJB2/DFNB1),” Pediatrics 103 (1999):546-674.

18. A. Solomon, “Defiantly Deaf,” NewYork Times Magazine, 28 August 1994, pp.40-68.

19. A. Middleton, J. Hewison, and R.F.Mueller, “Attitudes of Deaf Adults towardGenetic Testing for Hereditary Deafness,”

November-December 200044 H A S T I N G S C E N T E R R E P O R T

H A S T I N G S C E N T E R R E P O R T 45November-December 2000

American Journal of Human Genetics 63(1998): 1175-80.

20. A.E. Brusky, “Making Decisions forDeaf Children regarding Cochlear Implants:The Legal Ramifications of Recognizing Deaf-ness as a Culture Rather than a Disability,”Wisconsin Law Review (1995): 235-70, at 242.

21. See ref. 19, Middleton, “Attitudes ofDeaf Adults.”

22. R.A. Crouch, “Letting the Deaf BeDeaf: Reconsidering the Use of Cochlear Im-plants in Prelingually Deaf Children,” HastingsCenter Report 27, no. 4 (1997): 14-21, at 15.

23. J.R. Harris, The Nurture Assumption(Simon & Schuster Trade Paperbacks 1998),p. 193.

24. NIDCD Working Group Considera-tions for Developing and Implementing Ge-netic Diagnostic Tests for Hereditary HearingImpairment and Other Communication Dis-orders, Rockville, Md., 8 December 1998, p. 2. Available at http://www.nih.gov/nidcd/genetic.htm.

25. See ref. 19, Middleton, “Attitudes ofDeaf Adults”; B.P. Tucker, “Deaf Culture,Cochlear Implants, and Elective Disability,”Hastings Center Report 28, no. 4 (1998): 6-14.

26. I owe this question to Ingrid Burger.27. F.C. Dukepoo, “Commentary on ‘Sci-

entific Limitations and Ethical Ramificationsof a Non-Representative Human GenomeProject: African American Responses,’ AnAmerican Indian Perspective.” (SpecificallyAppendix A, “Key Points for a Resolution Op-posing the Human Genome Diversity Pro-ject,” and Appendix B, “The Heart of the Peo-ple Declaration.”) Science and EngineeringEthics 4, no. 2 (1998): 171-80.

28. See ref. 3, “Proposed Model,” p. 1442-47.

29. See ref. 2, Butterfield, “Indians AreCrime Victims.”

30. E. Juengst, “Group Identity andHuman Diversity: Keeping Biology Straightfrom Culture,” American Journal of HumanGenetics 63 (1998): 673-77.

31. “Genetic Diseases and the Jewish Com-munity: A Clarification,” Congress Monthly,July-August 1998: 3-7.

32. See ref. 13, Grady, The Search for anAIDS Vaccine,” pp. 84-85.

33. M.C. Nussbaum, Women, Culture, andDevelopment: A Study of Human Capabilities,ed. M.C. Nussbaum and J. Glover (Oxford:Clarendon Press, 1995), p. 1.

34. However, as Henry Greely has noted,prior acceptance of the project by recognizedcommunity leaders may well have a coercive

effect that can “taint” the voluntariness of indi-vidual consents. (Remarks at “Anthropology,Genetic Diversity, and Ethics Workshop,”University of Wisconsin at Milwaukee, 12February 1999).

35. C. Weijer, “The Need to Protect theCommunity in Research,” Cambridge Quarter-ly of Healthcare Ethics 8 (1999): 501-13.

36. S.M. Okin, Is Multiculturism Bad forWomen? (Princeton, N.J.: Princeton UniversityPress, 1999), p. 10.

37. See ref. 16, Tucker, “Deaf Culture,” p.9.

38. See ref. 10, Martin, workshop presenta-tion.

39. See ref. 36, Okin, Is Multiculturism Badfor Women?, pp. 22-23.

40. See ref. 36, Weijer, “The Need to Pro-tect the Community in Research.”

41. Y. Tamir, “Siding with the Underdogs,”in Is Multiculturalism Bad for Women? ed. S.M.Okin (Princeton, N.J.: Princeton UniversityPress, 1999), 47-52.

42. J.F. Childress and J.C. Fletcher, “Re-spect for Autonomy,” Hastings Center Report24, no. 3 (1994): 34-35 at 35.

Starting 1 July 2001, The Hastings Center and the Regional Pro-gram on Bioethics of the Pan American Health Organization

will offer a one-month Visiting Fellowship to The Hastings Centereach year. The fellowship will cover the travel and accommodationcosts of the visit with an additional stipend to cover food and otherincidental costs.

The purpose of the fellowship is to strengthen the bonds be-tween those in Latin America and the United States who are work-ing in bioethics and to provide opportunities for scholarly work andprofessional development for colleagues in Latin America. Al-though only one fellowship will be available each year, recipientsmay pursue two possible tracks, one designed to provide an intro-duction to bioethics, and the other to develop an advanced researchproject in bioethics.

The introductory track is open to those who have a strongprospect of teaching bioethics in a professional setting or who ex-pect to hold a government or private position for which knowledgeof bioethics will be important. Applicants interested in this trackshould submit a CV and a four- to five-page statement explainingwhy they are interested in the fellowship and how it will be usefulfor their professional work. The names of three references should beprovided, at least one of whom can attest to bioethics’ importancein the applicant’s work.

The research track will normally be awarded to those who al-ready have some background in bioethics and whose projectpromises to make a contribution to the field. Applicants shouldsubmit a three- to five-page statement about the proposed project,a CV, information on the applicant’s qualifications, and the namesof three people able to judge the applicant’s qualifications.

A good knowledge of English, both spoken and written, is abasic requirement of the fellowship program. Applicants shouldprovide a full mailing address, phone and fax numbers, and an e-mail address both for themselves and for their references. The fel-lowship cycle year will be from 1 July until 1 December, 2001, ap-plicants being allowed to propose dates for their one-month stay atthe Center. Three alternative dates should be proposed. A stay of upto six weeks is possible for those able to find their own support forthe additional two weeks.

The deadline for applications for the 2000-2001 cycle is 15April 2001.

Further information about both The Hastings Center and theRegional Program on Bioethics is located at www.thehastingscen-ter.org and www.paho.org.english/hdp/prb-prb-idx-html. Applica-tion material should be sent to

Programa Regional de Bioética OPS/OMSProvidencia 1017, Piso 7Casilla 27141Correo 27 Las Condes

VISITING FELLOWSHIP PROGRAM: Latin America and The Hastings Center