Genetic Determinism and Discrimination: a Call to Re-Orient
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INDEPENDENT Genetic Determinism and Discrimination: A Call to Re-Orient Prevailing Human Rights Discourse to Better Comport with the Public Implications of Individual Genetic Testing KarenEltis “Privacyconsiderationsnolongerariseoutofpar- While human rights scholarship has tradition- ticularindividualproblems;rather,theyexpress ally centered on individual civil liberties,4 the rapid conflictsaffectingeveryone.” 1 emergence and radical progression of biotechnology, genetic research in particular, may well prompt us to long with the promise of assuaging the scourge reorient – or at the very least revisit – human rights of disease, the so-called genetic revolution discourse. More specifically, it stands to reason that A unquestioningly imports a slew of thorny the results of individual screenings could haplessly be human rights issues that touch on matters such as dig- used to make general unintended assumptions about nity, disclosure, and the subject of this article – genetic entire ethnic or gender groups, thus compelling a re- testing and the social stigma potentially deriving examination of individually-oriented human rights therefrom. mechanisms. For instance, in fall 2005, a local psychi- It is now rather evident that certain otherwise atrist Pierre Mailloux caused a stir in Montreal when therapeutically promising forms of research can inad- he declared on a popular radio talk show that people vertently involve social risks exceeding the individual of color were somehow innately – or genetically pro- preoccupations of eclectic study participants.2 With grammed to be – less intelligent.5 Quite significantly, that as the case, the following proposes to examine the he hoisted the shield of science in defense of his unpal- peculiar stigma attached to genetic information and its atable assertions.6 potential human rights implications extending beyond Arguably similar in certain respects, a scientific the insurance and employment context. In so doing, it paper published in the JournalofBiosocialScience7 raises the intersection of interests between self-identi- not only suggests that one group of humanity is more fied members of historically vulnerable groups and the intelligent than others, but explains the genetic pro- group itself, which the law seems to take for granted cess that supposedly brought this about. The group is in the genetics context. While this paper purports to Ashkenazi Jews. The process is natural selection, and offer no more than an initial reflection on point, its the article discusses a dozen or so disease genes that immediate objective is to expand the examination of are common in Ashkenazi Jews and their purported human rights issues arising from individual genetic role in this intelligence process. While seemingly com- testing to include the potential ramifications for vul- plimentary at first glance, anyone even moderately nerable groups, which may be adversely affected by familiar with Jewish history can immediately grasp such research findings and bio-banking in the larger how contentions such as these (respecting ostensible sense.3 Jewish exceptionality or “genius”) can prove a breed- ing ground for racism (reminiscent of eugenics8).9 Harvard University’s embattled former president, Karen Eltis, LL.M.,isanAssistantProfessorattheUni- Lawrence H. Summers, is no exception, as he too was versity of Ottawa, Faculty of Law. She is also Director of theHumanRightsResearchandEducationCentre,Director the target of vociferous attacks and calls for resigna- oftheBi-JuridicalNationalProgram,andafacultymember tion10 following comments he made suggesting that oftheLaw&TechnologyGroup. innate genetic differences between the sexes may be 282 journal of law, medicine & ethics KarenEltis one explanation for why fewer women succeed in and possibly create new forms of stigmatization careers in math and science. In the same vein, the com- or discrimination. Serious harms for members of ments were a source of particular unease by reason of communities occurs if genetic information is uti- their purported scientific justification.11 lized to reinforce prejudice against existing classes These incidents and others unequivocally highlight of people (so-called ‘demic’ discrimination) and/or the growing impact of emerging genomics on tradi- to create new classes of genetic ‘untouchables.’25 tional human rights discourse and protective mecha- nisms. Importantly, traditional human rights theory To complicate matters even further, personal and group and instruments may not lend themselves particularly interests may quite plausibly diverge in the genetic well to the radical changes occasioned by genomic sci- context, thus shattering the oft-presumed intersection ence, as a comparative survey of the Canadian and of interests between a minority group member and her American normative framework undertaken herein community that the law seems to take for granted.26 We reveals. Indeed, the above-cited example respecting need look no further for an example than the BRCA the purported “intelligence” of certain cohorts illus- gene controversy,27 whereby certain individual Jewish trates how the results of individual screenings could be women may wish to be tested for the gene, while at the used to make general assumptions about entire ethnic same time, Jewish women as a community are increas- or gender groups.12 The public human rights ramifi- ingly voicing concern over the stigma of the “Jewish cations of genetic information are becoming imprac- breast cancer gene”28 and its collective implications.29 ticable to ignore,13 yet the individualistic orientation In a paper published in the AmericanJournalofPub- adopted by the tools for their promotion and protec- licHealth, Sheila Rothman points out that although tion subsist. Ashkenazi women are perceived to be at risk, they do Tellingly, while the debate among jurists on point not actually have higher incidences of the disease than has for the most part focused on whether genetic women of other ethnic origins. information is an exceptional form of personal infor- This is the dilemma of intersectionalities30 that mation,14 warranting separate normative treatment, the law pertaining to discrimination must struggle to it has done so almost exclusively in the insurance15 address in the area of genetics.31 Conceived from this and employment16 context – specifically, from the angle, even the proposed “therapeutic-benefit test,”32 perspective of the individual subjected to genetic which advocates genetic testing only if it offers health screening.17 But what of persons belonging to what benefits to the subject, may be of little use since while the Supreme Court of Canada refers to as “histori- an individual may indeed profit,33 the test results may cally vulnerable groups”?18 Curiously, the social19 eventually serve to promote harmful stereotypes of human rights implications of ethnicity through the the group with which the tested person is associated – prism of genomic knowledge have been the object of even though he or she may not self-identify with the little scrutiny.20 cohort in question.34 Notwithstanding, it bears repeating that some forms One such example – arguably most pressing to of research may carry risks of public import21 extend- inspect from a human rights perspective – is the study ing far beyond the individuals22 undergoing genetic of behavioral propensities (most notably susceptibil- testing,23 particularly when these individuals belong ity to violence)35 as they intersect with ethnicity.36 As – or are externally perceived as belonging – to a vul- shall be further discussed in Part II, scientists have nerable gender or ethnic group.24 A solitary voice has already uncovered “neural mechanisms of genetic risk so eloquently noted: for impulsivity and violence in humans.”37 While it is beyond the scope of this present endeavor A fifth distinctive aspect of DNA-derived informa- to fully flesh out these multiple and highly complex tion is that it is potentially shared by members of issues, the implications for human rights both within larger ethnic, racial, or other communities beyond and without criminal justice are staggering, particu- the individual or family. Sickle-cell anemia is asso- larly when we are reminded that the very term “race” ciated with persons of African descent, Tay-Sachs was coined in the context of “scientific” research.38 If disease with persons of Ashkenazi Jewish heritage, “the harms of racially targeted testing extend beyond and Mediterranean Fever with Armenians. The the individual to entire social groups” as Lee et al. history of eugenic abuses provides a frightening suggest,39 can even distinctive statutory vehicles fash- illustration of how easily group stigmatization can ioned within “our current, individually focused system result from the misuse of such genetic informa- for protecting human subjects in research…provide tion. Increases in knowledge from DNA-derived adequate protection” from the public consequences of information intensify the potential for these abuses genetic testing?40 100 years of transplantation • summer 2007 283 INDEPENDENT My purpose here again is to spark preliminary reflec- “genetic exceptionality,”45 preferring instead to let the tion on this very matter, past the prevailing individu- traditional juridical mechanisms pertaining to per- alistic privacy discourse. Cognizant of the value and sonal information govern the matter. Regardless of the tremendous potential of genetic research, I attempt approach, such data have been