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Genetic Determinism and Discrimination: A Call to Re-Orient Prevailing Human Rights Discourse to Better Comport with the Public Implications of Individual Genetic Testing
Karen Eltis
“Privacy considerations no longer arise out of par- While human rights scholarship has tradition- ticular individual problems; rather, they express ally centered on individual civil liberties,4 the rapid conflicts affecting everyone.” 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 Journal of Biosocial Science7 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., is an Assistant Professor at the Uni- Lawrence H. Summers, is no exception, as he too was versity of Ottawa, Faculty of Law. She is also Director of the Human Rights Research and Education Centre, Director the target of vociferous attacks and calls for resigna- of the Bi-Juridical National Program, and a faculty member tion10 following comments he made suggesting that of the Law & Technology Group. innate genetic differences between the sexes may be
282 journal of law, medicine & ethics Karen Eltis 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 American Journal of Pub- adopted by the tools for their promotion and protec- lic Health, 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
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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 construed primarily to revisit the legal analysis of genetic testing in terms through the optic of personal privacy rather than dig- of human rights, in an effort to highlight the potential nity,46 which follows the individualized approach. risk of discrimination that biobanking may inadver- Canada is no exception, having to date refrained tently have upon ethnic or other vulnerable groups from crafting any distinctive legislative vehicle to deal and the need to adjust individually-oriented human with genetic information47 (apart from legislation rights theory accordingly. By endeavoring to reframe dealing specifically with the use of DNA in criminal the legal debate surrounding genetics – now focus- investigations and those relating strictly to repro- ing primarily, if not exclusively, on personal informa- ductive technologies).48 Instead, most provisions rel- tion in the employment and insurance context – with a evant to genetic discrimination are found in general view to realigning legal discourse with the imperatives norms drafted in the abstract of genetics (i.e., not tak- of remarkable scientific advances, this initial reflection ing genetics into account) and often long before the serves as a prelude to rethinking the relevant norma- so called “genetic revolution.” Chief amongst these is tive framework in light of the leveled critiques. From Canada’s constitutional law, data protection (privacy a human rights perspective, such an approach would protecting measures) instruments, and human rights recognize the multiplicity of interests at stake and the statutes. According to this approach, genetic discrimi- interplay of intersectionalities in order to promote nation can be dealt with under the normative struc- more informed policy decisions. ture designed for personal information and privacy To sum up the predicament addressed in this arti- generally. A closer look is mandated at this juncture. cle: First, as discussed in Part I, which summarily exposes the relevant normative framework in Canada A. Constitutional Law and the U.S., the debate is almost entirely confined The Canadian Charter of Rights and Freedoms offers to the employment/insurance ramifications of genetic some measure of protection for personal information discrimination.41 Secondly, the law generally assumes from government intrusions. Based on the Interna- identity of interest between an individual and his or tional Covenant on Civil and Political Rights (ICCPR), her social group, and thirdly, it seems to disregard the the Charter is an individualistic document, whose stoicism42 with which the public tends to greet scien- focus is on individual rather than collective rights as tific data,43 and the media’s often simplistic presenta- much as it is on state rather than private infringe- tion thereof as addressed in Part II. Finally Part III ments thereupon.49 For our purposes, this document sets forth a number of preliminary recommendations is most significant in light of the potential public or aimed at forming the basis for addressing the leveled group implications of genetic testing – problems the critiques. Charter may be ill-equipped to address. While Charter protections of personal information Part I and privacy are by no means explicit (nor do they spe- With an eye towards igniting debate on these press- cifically pertain to genetic or even health information), ing questions, this article will first briefly review the the Charter is deemed a “living tree,” able to evolve conceptual and normative framework relevant to the with the imperatives of the time, including advances protection of human rights in the genetics context in in science and technology. Canada and the United States. As conducting a thor- Therefore, while privacy is not actually an enshrined ough normative survey would be beyond the scope of Charter value, privacy principles are gleaned from this undertaking, the following concise comparative Charter jurisprudence, the most relevant provisions apercu is tendered with the sole intention of highlight- being s. 7, liberty and security of the person, and s. 8, ing the law’s seemingly single-minded focus on the freedom from unreasonable search and seizure. While individual employment and insurance ramifications the right to privacy has been crowned the most natu- of genetic information in both countries and its conse- ral casualty of improper genetic testing, it stands to quent insufficiency from a human rights perspective. reason that the social implications deriving therefrom are liable to affect group rights, most notably equality The Canadian Legal Framework and dignity. In contradistinction to what appears to characterize Arguably then, an equally pertinent Charter value the American experience at the state level,44 many relevant to the present context is section 15(1), which Western democracies have chosen not to recognize protects against prohibited discrimination and is said
284 journal of law, medicine & ethics Karen Eltis to be predicated on human dignity. It is precisely the Personal health information includes ‘information dignity-based rationale that may best comport with derived from the testing or examination of a body the protection of sensitive information pertaining to part or bodily substance of the individual,’ and group defamation. Particularly in the leading case of therefore includes genetic test results. Confusion Law v. Canada (Minister of Employment and Immi- remains about whether the Act covers physicians, gration) where the dignity prong of the equality test since the Act applies to commercial organizations, was set forth, the Supreme Court of Canada seemed and there is some doubt whether this includes the to make a rare reference to group rights,50 declaring: traditional professions,54 “Human dignity is harmed when individuals and groups are marginalized, ignored, or devalued, and is which are generally self-regulated. Similar provincial enhanced when laws recognize the full place of all indi- statutory instruments serve to govern the non-federal viduals and groups within Canadian society.” (Empha- private sector. Most advanced of these is the Quebec sis added.) In a word, therefore, discrimination is to be Protection of Personal Information in the Private Sec- assessed from the optic of dignity. tor Act.55 A few caveats: Here again, identity of interests between the individual and group is simply presumed. E. Provincial Health Information Legislation Furthermore, Charter rights are not absolute but may A number of provinces “have recently enacted leg- be reasonably violated, provided that the infringement islation to deal specifically with privacy and confi- is proportionally justified as per section 1 of the Char- dentiality of health care information.”56 “These acts ter (evaluated using the Oakes test). More importantly regulate the collection, use and disclosure of medical perhaps, only discrimination at the hands of govern- records, including genetic records.”57 Similarly, “pro- ment is constitutionally proscribed. vincial legislation regulating health care and health However, because Charter values are said to perme- care institutions often contains provisions protecting ate the law’s understanding of private dealings, the the confidentiality of medical information by limit- Canadian Charter’s values must infuse the interpreta- ing its further disclosure which would apply to genetic tion of all legislation, particularly provincial human information.”58 rights codes. The American Legal Framework B. Human Rights Instruments At present writing, no specific legislative framework While the Charter’s own application to the private related to genetic discrimination is in place at the fed- realm is at best indirect, provincial human rights eral level, despite repeated attempts to legislate. Some instruments explicitly govern private dealings. Chief attribute this legal lacuna to the Federal government’s amongst them is the Quebec Charter, which unlike near single-minded focus on stem cell research and its counterparts is a document of quasi-constitutional cloning. Thus, in terms of human rights “much of the stature. Moreover, in contradistinction to the Cana- debate surrounding genetic research in the U.S. has dian Charter, the Quebec Charter offers explicit pro- focused on the twin issues of human cloning and the tection for privacy, equality, and dignity. production of stem cells from human embryos, per- haps because of a perceived link to the controversial C. Tort topic of abortion.”59 Tort law may also be germane in this respect. The In absence of precise federal legislation on point, statutory tort of the invasion of privacy varies by prov- scientists have largely been left to their own devices, ince.51 Without going into greater detail, it suffices to embracing a system of voluntary self-regulation.60 note the greater generosity of the Canadian approach Notwithstanding the dearth of explicit norms regulat- in sanctioning privacy infringements more readily.52 ing genetic discrimination at the federal level, protec- This approach, of course, would be of similar relevance tion may nonetheless be gleaned from a number of under the U.S. framework.53 existing legal instruments of general pertinence.
D. Specific Privacy Protection Instruments A. The U.S. Constitution Across Canada, the Federal Privacy Act and the rela- It stands to reason that discrimination on the basis of tively new Personal Information Protection and Elec- genetic status could implicate the Equal Protection tronic Documents Act (PIPEDA) protect personal Clause of the U.S. Constitution.61 Thus, for instance, information, including genetic information, deemed in Norman-Bloodsaw v. Lawrence Berkeley Labora- a subset thereof. PIPEDA only applies to employers tory,62 the Ninth Circuit held that an individual has a subject to the federal jurisdiction. constitutional right of privacy in her genetic informa-
100 years of transplantation • summer 2007 285 INDEPENDENT tion and other such personal information that restricts from performing the essential functions of the posi- unauthorized testing of bodily fluids for employment tion, and the request is consistent with the Rehabilita- purposes. tion Act. Genetic monitoring of biological effects of However, constitutional protection is of limited toxic substances in the workplace is permitted if the application to this inquiry, as it applies exclusively employee has provided written, informed consent, and to state action, and only few (namely government the monitoring results are aggregated and do not dis- employees) can practically avail themselves of its safe- close the identity of individual employees. Addition- guards against employer intrusions in that context.63 ally, the Order “does not limit the statutory authority That raises particular concern as most violations in of a Federal department or agency to…promulgate or the area of genomics are expected to be attributed to enforce workplace safety and health laws and regu- private actors. As Frances Raday warns, lations.”68 While endorsed by the American Medical Association, the American College of Medical Genet- [I]n our day, the most grievous and most frequent ics, the National Society of Genetic Counselors, and abuses of civil liberties occur in the exercise of pri- the Genetic Alliance, this instrument too is of limited vate power. The occasions for discriminatory state value and application since its relevance is restricted to action are both comparatively few and subject to the employment context and to federal employers.69 relatively formalized procedures for their exercise Of greater pertinence are a number of juridical when contrasted with an employer’s power to dis- vehicles that, although general in scope, may be har- miss, a landlord’s power to exclude the needy, or an nessed for the purpose of protecting human rights in entrepreneur’s refusal to provide service.64 the genetic context, given the limited benefit of the preceding tools. While it is beyond the scope of this B. 42 U.S.C. § 1981 present undertaking to delve into a detailed examina- Whereas Section 1981’s prohibition on racial discrimi- tion of the existing normative framework,70 it suffices nation in contracts, for its part, extends to nongov- to point out the relevant legal regimes in order to draw ernmental discrimination, it only offers remedies attention to their insufficiency, particularly in respect in cases of intentional discrimination. Moreover, of the most complex of human rights issues (beyond some uncertainty endures as to whether genetically those of employment and insurance), such as dignity prompted unequal treatment can be equated to racial and intersectionalities that this paper addresses. Most discrimination. notable are Title VII of the Civil Rights Act of 1964, the Americans with Disabilities Act, the Health Insur- C. Executive Order 13,145 ance Portability and Accountability Act at the federal On February 8, 2000, former President Clinton issued level, and genetics-specific statutes at the state level, Executive Order 13,145.65 The Order bars federal again all pertaining to employment and insurance. employers from obtaining or disclosing “protected genetic information,” which includes information D. Title VII of the Civil Rights Act of 1964 about the genetic tests of an individual or her family Under Title VII, it is unlawful for an employer to base members, or information about the occurrence of a dis- employment decisions, such as hiring or dismissing, ease, medical condition or disorder in the individual’s “on an individual’s race, color, religion, sex, or national family members.66 Furthermore, the Order states that origin.” Title VII of the Civil Rights Act of 196471 bars federal employers shall not “discharge, fail or refuse to disparate treatment predicated on race in employ- hire, or otherwise discriminate against any employee ment and would therefore plausibly offer protection with respect to the compensation, terms, condi- from an employer who discriminates on the basis of tions, or privileges of employment of that employee” genetic status. Problematically, however, that protec- or “limit, segregate, or classify employees in any way tion would only extend if the genetic status in question that would deprive or tend to deprive any employee is deemed to be significantly connected to a particular of employment opportunities or otherwise adversely race or ethnic group, which is rarely the case.72 affect that employee’s status” because of “protected genetic information with respect to the employee E. Americans with Disabilities Act (ADA) or because of information about a request for or the In line with other federal statutory schemes, the ADA receipt of genetic services by such employee.”67 The does not specifically address genetic discrimination Order includes several exceptions to the prohibitions. but may nonetheless offer some measure of protec- Federal employers, for example, may request pro- tion on point in the workplace. In particular, the ADA tected genetic information if it is only used to diagnose applies to private-sector employers73 and prohibits dis- a current condition that could prevent the employee crimination against individuals perceived as having a
286 journal of law, medicine & ethics Karen Eltis disability and those with expressed genetic conditions. islation.77 Of particular interest for purposes of this Enforced by the Equal Employment Opportunity article is that these relate specifically to employment Commission (EEOC) and subject to an interpretation and health insurance.78 Accordingly, 41 states have protocol issued in March 1995 by the Equal Employ- enacted statutory schemes respecting insurance, and ment Opportunity Commission (EEOC), the ADA is 32 states have laws related to genetic discrimination said to also apply to genetic pre- dispositions.74 Such an interpre- tation would likely extend the While specific attention is rarely given to genetic protection of the ADA to individ- information, any focus appears to be on the uals with symptomatic genetic employment and insurance context. Remarkably, disabilities, but not to individuals with unexpressed genetic condi- however, the question of the social implications of tions. However, even the former genetic discrimination has gone largely unconsidered category of individuals would not by lawmakers and jurists in the U.S. and Canada. be protected from requirements or requests to provide genetic information to employers following a conditional offer in the workplace. A glimpse of this rudimentary nor- of employment, or requirements to provide medical mative review undoubtedly illustrates that most of job-related medical information consistent with busi- these legal instruments, whether specific at the state ness necessity. level or general like those of federal ilk, would impact genetic discrimination primarily, if not exclusively, in F. Health Insurance Portability and Accountability the employment and insurance context from a human Act of 1996 (HIPAA) rights perspective. HIPAA bars group health plans from using any health status-related factor including genetic information to Part II deny or limit coverage or increasing insurance premi- The above comparative summary was offered for the ums but does not, for that matter, preclude employers express purpose of illustrating that in Canada, not from denying coverage altogether. unlike the United States, genetic information is labeled Most importantly, it only applies to employer-based “personal information,” precisely the type of informa- and commercially issued group health insurance not tion that personal data protection statutes and other to private individuals seeking health insurance on the human rights instruments were intended to regulate. market or in the employment context per se.75 While specific attention is rarely given to genetic infor- mation, any focus appears to be on the employment G. The Standards for Privacy of Individually and insurance context. Remarkably, however, the Identifiable Health Information (Regulations)76 question of the social implications of genetic discrimi- The Standards for Privacy of Individually Identifiable nation has gone largely unconsidered by lawmakers Health Information protect the privacy of personal and jurists in both countries. health information maintained by “covered entities” In other words, while the U.S. has chosen to spe- by creating limitations on access, use and disclosure of cifically legislate at the state level and Canada has such information, fair information practices, and pri- not, both focus on employment and insurance from vacy and security policies. “Covered entities” include an individual perspective. Moreover, genetic discrimi- health providers, health insurance plans, health care nation seems to be construed through the prism of clearinghouses, and business associates such as claims personal privacy. Nevertheless, it may in fact hold sig- processors, billing managers, and data analyzers. The nificant collective implications, as it gradually relates regulations give patients the right to access their medi- to defined ethnic groups. This shift may in turn invite cal records and to know who has accessed their medi- us to revisit – perhaps even reframe – the debate. cal records, limit the nonconsensual use and disclo- Plainly put, while genetic information may very well sure of the information, and limit most disclosures of resemble other forms of predictive health data for pur- personal health information to the minimum neces- poses of insurance and employment, its public ramifi- sary for the intended purpose. cations, specifically its impact on popular understand- ing, or misunderstanding of race and ethnicity, appear H. The State Level rather distinctive and is therefore meritorious of closer In contradistinction to their federal counterpart, most examination. states have passed some form of genetic privacy leg-
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The Peculiarity of Scientific Data or gender minorities susceptible to discrimination, If science is indeed the “secular religion of our time,”79 independently seek out the therapeutic benefits of (a phrase popularized by Irwin Cotler), then the height- genetic testing. These results can be subsequently ened preoccupation relating to the public impact of compiled and used to draw general conclusions in genetic information derives from its perceived flawless- their regard. ness. Seen from that angle, its uniqueness if nowhere While genetic information may ultimately and hap- else lies in its peculiar ability to transform perceptions pily serve to disrupt simplistic and misleading notions of the differences among us as “genetic” and therefore of ethnicity from whence much of racism derives and immutable,80 thus leading to a “medicalization” of rac- potentially lead us to discard dichotomous terminology ism or sexism81 that is presented as scientific fact.82 of “race,”90 the stoicism with which the public tends to Edifying on this last point, the emergence and embrace “scientific” conclusions91 arouses concern as popularity of “race science” in 19th-century European to its potential manipulation. Policymakers frequently academia resulted in a “belief, backed by the now know too little about science to regulate effectively; unassailable authority of science, that racial groups the public knows even less. were fixed and immovable, and that nature itself pre- A related worry is that non-genetic factors will be left scribed the domination of superior races over inferior unaddressed. As Lee et al. caution, “Human cultural races.”83 As Hudson warns, “We need to be especially identity is relegated to a simplistic biological stan- wary of the kind of racism linked to the pronounce- dard….The elision of economic factors such as pov- ments of scientists”84 if only by reason of its unparal- erty, employment, and unequal access to resources…
So deeply inculcated are the assertions of the so called “race science” of past centuries, that even subsequent unequivocal evidence of their accuracy could not entirely erase their poisonous vestiges. What is more, members of both the media and the legal profession tend to turn careful equivocal scientific assertions into unequivocal statements. leled tenacity. So deeply inculcated are the assertions are subsumed within a genetics discourse that reifies of the so called “race science” of past centuries, that notions of physiological difference.”92 even subsequent unequivocal evidence of their accu- Importantly, genes only give us a part of the picture racy could not entirely erase their poisonous vestiges. as Yanai Ofran observes offering the poignant example Scientists enjoy the trust that politicians have lost: of the protein hormone leptin. While mice lost a sig- Put on a white robe and earn quasi-automatic legiti- nificant amount of weight, humans surprisingly did macy.85 What is more, members of both the media86 not in clinical trials because scientists had discounted and the legal profession tend to turn careful equivo- social facts. Ofran points out that people, unlike mice, cal scientific assertions into unequivocal statements.87 eat for various social reasons – least amongst them, The paradox, as Arthur Caplan observes, is there- arguably, is hunger.93 fore as follows: “Although the predicting capacity of As noted above, not only do genetic traits some- genetic information is flawed at best, people’s percep- times translate into physical and mental illnesses, they tions of their genes [and those of others] is peculiar” may also manifest themselves as tendencies towards (emphasis added) and indeed fatalistic if not utterly certain behaviors, including violence. It is far from fic- stoic. Dr. Caplan further points out that people tend tion, for example, that a reported link exists between to be convinced that genetic information is some- the MAOA gene and abnormally aggressive behavior, how “revealing about their inner blueprint or their such as arson, attempted rape, and exhibitionism: A inner programming.”88 For her part, Bartha Knoppers gene closely associated with violent behavior in men labels this “the phenomenon of reductionism,” which has been identified.94 she refers to as “genes are us, driven by the percep- In France, children of convicts and other violent tion that you are your genes, and you are fatally deter- offenders have been tested genetically at the embry- mined and predisposed by your genetic code.”89 onic stage, with a recommendation to follow up with As previously noted, this is most likely to occur certain children until adulthood for violence propen- indirectly, even insidiously, as individuals, who sities purportedly uncovered genetically.95 Müller- happen to belong to or be associated with ethnic Hill has asked: What will happen if additional “crime
288 journal of law, medicine & ethics Karen Eltis genes” (i.e., genes whose presence or absence purport- accuracy of genomic knowledge is questionable at best edly indicates a predisposition to criminal/antisocial in this early stage.101 The same holds true for the media behavior in an individual or group) that are related and those who premise their arguments on genetic to mutational events are identified and are found to data, a fortiori. In her own research, Celeste Condit102 vary in frequency among ethnic groups?96 As Patrik has emphasized the need to subject the language that Florencio correctly observes, “Whereas non-geneti- genomic researchers employ in their genetic accounts cally influenced behavior will be seen as malleable and for human variation to greater scrutiny.103 Even more the product of free will, genetically influenced behav- so do those outside the scientific community, whose ior will be misinterpreted as being unmalleable and parlance tends to be far more unequivocal, need to beyond the control of the affected individual. This tread with caution in this vein. It is here perhaps that belief has been referred to as ‘neurogenetic determin- jurists and indeed the law may have the most valu- ism’ or ‘genetic fatalism.’”97 able informative role to play through increased multi- Perhaps of greater concern, as noted, is that our indi- disciplinary collaboration in the area of genomics, for vidually centered system, which deems genetic infor- “when we discuss genetics, our words have different mation “personal” is arguably ill-equipped to deal with meanings.”104 its public implications, especially where there is dis- The discursive constructions of law often dictate the cord among particular group members regarding the enforcement of prevailing moral and social norms and benefits of testing. To paraphrase Michel Rosenfeld in serve to mold our perception of issues most sensitive a different context, genetic information can “produc[e] to the body politic, such as the exogenous imposition individual injuries on account of group affiliation”98 of ethnic or gender/sexual identity. While the inter- but also group injuries on account of individual test- section between law and culture is nothing new, the ing. This in turn may, as noted, give rise to a conflict manner in which law’s linguistic sphere of influence between the best interests of the test subject and his or that impinges upon budding genomic knowledge per- her group, which the law has yet to address. taining to gender and ethnicity impels further consid- eration from the optic of human dignity, without the Part III employment and insurance context. What Then Can and Must We Do? In this vein, an initial proposal, the details of which The modest purpose of this endeavor is to draw atten- clearly exceed the scope of this present endeavor, tion to the social ramifications of genetic discrimina- might be to consider the German approach, which tion as a first yet necessary step towards reframing the provides for ongoing discussion and interdisciplinary “genetic” legal debate, which is now narrowly center- interaction. Recognizing that advances in bioscience ing chiefly if not solely on personal information pri- question the legal foundation of one’s status and that marily in the employment and insurance context. attempts to simply “keep up” with scientific progress The objective is to ensure that any legal responses would likely leave the law one step behind, the Ger- that are ultimately offered are informed by rights man Federal Parliament committed itself to an ongo- – both individual and group – rather than consider- ing discussion on such research. Therefore, rather than ations relating exclusively to privacy or health, since adopt limitative conditions (in the stem cell context), the “therapeutic benefits test” as noted may not always it asked to be regularly informed of future develop- offer the requisite solution in this context. From a ments in lawmaking with detailed periodic reports.105 human rights perspective, such an approach would France has similarly opted for an incremental, proce- recognize multiplicity of interests at stake, beyond pri- dural approach to the regulation of biotechnology by vacy, in order to promote more informed policy deci- choosing to attach a Sunset Clause to relevant legal- sions, most importantly, as noted, human dignity.99 ization. This approach thus imports an obligation to Finally, in light of science’s above-described peculiar re-examine legislation on a fixed date and allow for propensity to elicit stoic and resilient public accep- ongoing discussions on the topic.106 tance and the simplistic distortion of scientific data The ultimate goal of human rights scholarship in in the media, the hope is to similarly invite a renewed the area of genetics therefore appears to be developing focus on the language employed by genetic research- a broader, more inclusive framework that will assist ers and those who report on their findings and on its policy makers and courts in their quest to confront the potential social implications. impact of new technology on the law’s development, Researchers, as Raj Bhopal cautions, “cannot be an undertaking that will occupy both lawmakers and responsible for the public’s perception of genetics but the courts as they struggle with law in the age of the must be aware of the potential impact of their work ongoing genomic revolution. on social relations,”100 particularly when the scientific
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References Jewry: Portrait of a Recent Founder Event,” The American Jour- 1. S. Simitis, “Reviewing Privacy in an Information Society,” Univer- nal of Human Genetics 78 (2006): 487-497. sity of Pennsylvania Law Review 135 (1987): 707-740, at 709. 10. Summers ultimately resigned. See Letter from L. H. Summers, 2. E. T. Juengst, “FACE Facts: Why Human Genetics Will Always “Harvard University: The Office of the President,” February Provoke Bioethics,” Journal of Law, Medicine & Ethics 32, no. 2 21, 2006, available at
290 journal of law, medicine & ethics Karen Eltis
vation: Health Law in the 21st Century, Health Law Journal, 25. See Green and Thomas, supra note 14, at 584-585. Signifi- Special Supplement 41 (2003); T. Lemmens, “Selective Justice, cantly, this discussion ultimately similarly turns to insurance Genetic Discrimination and Insurance: Should We Single Out and employment considerations as well: “For example, recent Genes in Our Laws?” McGill Law Journal 45, no. 2 (2000): breast cancer research in the Ashkenazic Jewish community 347-412 [hereinafter cited as Lemmens, “Selective Justice”]. suggests that a BRCA mutation potentially predisposing one 16. P. S. Miller, “Is There a Pink Slip in My Genes? Genetic Dis- to breast and ovarian cancer exists in over two percent of this crimination in the Workplace,” Journal of Health Care Law and population. Since a majority of carriers have a 586 mutation Policy 3 (2000): 225-265; P. S. Miller, “Genetic Discrimination detectable by standard molecular techniques, it is possible to in the Workplace,” Journal of Law, Medicine & Ethics 26, no. 3 identify women with the mutation. While researchers are only (1998): 189-197; P. S. Miller, “Analysing Genetic Discrimination beginning to understand the long term benefits of this discov- in the Workplace” in S. Krimsky and P. Shorett, eds., Rights ery, the immediate repercussions might be externally or inter- and Liberties in the Biotech Age: Why We Need a Genetic Bill of nally imposed discrimination against women of Ashkenazic Rights (Lanham, MD: Rowman & Littlefield, 2005): 173-178; heritage. External discrimination may result from mandatory L. B. Andrews, M. J. Mehlman, and M. Rothstein, Genetics: screening of Jewish females. Those found to have the mutation, Ethics, Law & Policy (St. Paul, MN: West Publishing, 2002); P. or even untested but suspected members of the group, might S. Miller, “Commentary: Genetic Discrimination in the Work- be denied employment or insurance because of apprehensions place,” Genetics in Medicine 3, no. 3 (2001): 165-168; M. R. about their health status.” Id., at 586-587. Natowicz, J. K. Alper, and J. S. Alper, “Genetic Discrimination 26. S. Becker, “Constitutional Classifications and the ‘Gay Gene,’” and the Law,” American Journal of Human Genetics 50 (1992): Journal of Law and Health 16, no. 1 (2001): 27-32. 465-475. 27. For a general discussion see B. M. Dickens, N. Pei, and K. M. 17. D. Hellman, “What Makes Genetic Discrimination Excep- Taylor, “Legal and Ethical Issues in Genetic Testing and Coun- tional?” American Journal of Law and Medicine 29 (2003): 77- seling for Susceptibility to Breast, Ovarian and Colon Cancer,” 116; P. S. Miller, “Genetic Discrimination: Does It Exist? What Canadian Medical Association Journal 154, no. 6 (1996): Are Its Implications?” Journal of Law and Health 16 (2001): 813-818. 39-45; see generally, T. Lemmens and D. R. Waring, eds., Law 28. Considered to be a side effect of genes selected for their role and Ethics in Biomedical Research: Regulation, Conflict of in boosting brain function – a thesis set forth in the above- Interest, and Liability (Toronto: University of Toronto Press, cited research; see Cochran, Hardy, and Harpending, supra 2006). See also L. O. Gostin and J. G. Hodge, Jr., “Personal Pri- note 7. See also Labman, supra note 3. The article discusses vacy and Common Goods: A Framework for Balancing under people’s reticence to participate in ‘genetic’ cancer research the National Health Information Privacy Rule,” Minnesota Law studies for fear of being stigmatized as having a predisposition Review 86 (2002): 1439-1479. towards cancer. See also Green and Thomas, supra note 14, at 18. Law v. Canada (Minister of Employment and Immigration), 586-587. 1 S.C.R. 497 at paragraph 16 (1999), Canadian Legal Informa- 29. S. G. Stolberg, “Concern Among Jews Is Heightened as Scien- tion Institute Web site, available at
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36. R. Witzig, “The Medicalization of Race: Scientific Legitimiza- For a more detailed discussion see B. Williams-Jones, “Private tion of a Flawed Social Construct,” Annals of Internal Medicine Genetic Testing in Canada: A Summary,” Health Law Review 9 125 (1996): 675-9. (2001): 10, Health Law Institute Web site, available at
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them who may wish to clarify that this is only in the employer- disease, or other disorders. In such cases, entities that discrimi- employee context; the legislation applies to all businesses with nate against such individuals are regarding the individual as respect to their customer’s personal information. having an impairment that substantially limits a major life 55. An act respecting the protection of personal information in the activity. For an in-depth critique of the ADA’s shortcomings as private sector R.S.Q., Chapter 39.1. they relate to genetic information, as well as other U.S. statu- 56. E. Oscapella, “Genetics, Privacy and Discrimination,” Canadian tory schemes, see N. Kling, S. Pillay, and G. A. Lasprograta, Biotechnology Advisory Board Publication (2000), available “Workplace Privacy and Discrimination Issues Relating to at 100 years of transplantation • summer 2007 293 INDEPENDENT ROGEL.PDF> (last visited February 22, 2007). See above arti- with impulsive aggression, suggest neural systems-level effects cle for a discussion on the media’s tendency to aggrandize and of X-inactivation in human brain, and point toward potential unequivocate scientists’ statements relating to their research targets for a biological approach toward violence.” in genetics. 95. S. Simitis, The Legal Limits of Genetic Research and Results, 87. T. Duster, “Human Molecular Genetics and the Subject of Race: report presented to the XIIth Congress of the International Contrasting the Rhetoric with the Practices in Law and Medi- Academy of Comparative Law, July 2006. cine,” keynote address presented to the West Harlem Environ- 96. B. Müller-Hill, “Truth, Justice, and Genetics,” Perspectives in mental Action conference and community dialogue on Human Biology and Medicine 43, no. 4 (2000): 577-583. Genetics, Environment, and Communities of Color: Ethical 97. See Annas, supra note 14; see also E. Toback and H. M. and Social Implications, February 2002. See generally W. M. Proshanky, eds., Genetic Destiny: Race as a Scientific and Social Sage, “The Lawyerization of Medicine,” Journal of Health Poli- Controversy (New York: AMS Press, 1976). tics, Policy and Law 26, no. 5 (2001): 1179-1195. 98. M. Rosenfeld, “Can Human Rights Bridge the Gap between 88. According to Dr. Caplan, people tend to believe that their Universalism and Cultural Relativism? A Pluralist Assessment genes are somehow “revealing about their inner blueprint or Based on the Rights of Minorities,” Columbia Human Rights their inner programming.” See A. Caplan, “Are We Ready for Law Review 30 (1999): 249-282, at 261. Mass Genetic Testing: Ethical and Social Hurdles?” lecture 99. J. Harris and J. Sulston, “Genetic Equity,” Nature Reviews presented to the Annual Meeting of Women in Biotechnology, Genetics 5 (2004): 796-800, at 796. October 2002, at 5, New York University School of Medicine: 100. See Bhopal, supra note 20. Research Computing Resource Web site, available at 294 journal of law, medicine & ethics