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Genetic Determinism and : A Call to Re-Orient Prevailing Discourse to Better Comport with the Public Implications of Individual

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 ,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 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 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 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 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 (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 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- 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 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 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 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 . 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 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 , 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 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 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 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 (last visited February 3. S. Labman, “Genetic Prophecies: The Future of the Canadian 21, 2007). Workplace,” Manitoba Law Journal 30, no. 2 (2004): 227-247. 11. In Summers’ January 14 remarks, he proposed that innate Labman provides the example of a company that screened only genetic differences between the sexes may be one explanation African Americans for sickle-cell anemia indicators. The FDA for why fewer women succeed in math and science careers. See also approved a drug exclusively tailored to African Americans; National Organization for Women, Press Release, NOW Calls see S. Saul, “FDA Approves a Heart Drug for African Ameri- for Resignation of Harvard University’s President, January 20, cans,” New York Times, June 24, 2005, at C2. For a thorough 2005, National Organization for Women Web site, available at discussion and critique of the advent of “race-based medicine” (last and medical “racial profiling,” see S. Hoffman, “Racially-Tai- visited February 21, 2007). lored Medicine Unraveled,” American University Law Review 12. See R. A. Zilinskas and P. J. Balint, eds., The Human Genome 55 (2005): 395-452, available at (last visited Febru- cal Dilemmas (Westport, CT: Praeger, 2001). ary 21, 2007). 13. M. A. Rothstein, ed., Genetic Secrets: Protecting Privacy and 4. See e.g., I. Berlin, “Two Conceptions of Liberty” in Four Essays Confidentiality in the Genetic Era (New Haven: Yale University on Liberty (Oxford: Oxford University Press, 1969). Press, 1997). 5. CTV.ca News Staff, “Quebec Radio Shrink Sparks Complaints 14. R. A. Epstein, “The Legal Regulation of Genetic Discrimination: of Racism,” September 29, 2005, available at (last visited Febru- “DNA: Five Distinguishing Features for Policy Analysis,” Har- ary 21, 2007). vard Journal of Law and Technology 11, no. 3 (1998): 571-591. 6. Id. On September 25, 2005, Pierre Mailloux suggested on his Green and Thomas state: “[T]he influx of genetic science into French-language program, broadcast by radio station CKAC, that biomedicine and research raises the question of whether pre- the artificial selection inherent to left black and Native dictive or diagnostic information derived from the molecular North Americans with an intellectual deficit: “Those blacks who analysis of DNA merit distinctive legal consideration or policy were too intelligent, too tricky, they were slaughtered,” Mailloux treatment.” See C. S. Diver and J. Maslow Cohen, “Genopho- said. “It’s the consequence of an artificial selection. They can run bia: What is Wrong with Genetic Discrimination?” University faster, they’re stronger, but their IQs are consistently lower.” of Pennsylvania Law Review 149, no. 5 (2001): 1439-1482. See 7. G. Cochran, J. Hardy, and H. Harpending, “Natural History also G. J. Annas, “Genetic Prophecy and Genetic Privacy – Can of Ashkenazi Intelligence,” Journal of Biosocial Science 35, no. We Prevent the Dream from Becoming a Nightmare?” Ameri- 5 (2006): 659-693, available at (last visited Feb- after cited as Annas, “Genetic Prophecy”]. Annas believes that ruary 21, 2007). genetic information is “uniquely private and personal” for three 8. See J. A. Barondess, “Care of the Medical Ethos, with Some reasons: “It can predict an individual’s likely medical future; it Comments on Research: Reflections after the Holocaust,” Per- divulges personal information about one’s parents, siblings, and spectives in Biology and Medicine 43, no. 3 (2000): 308-324. children; and it has a history of being used to stigmatize and As Green et al. note, “Historically, genetic information has been victimize individuals.” See also L. O. Gostin and J. G. Hodge, used to discriminate against individuals and groups, particularly Jr., “Genetic Privacy and the Law: An End to Genetic Excep- Jews and other minorities.” See H. Markel, “The Stigma of Dis- tionalism,” Jurimetrics 40, no. 1 (1999): 21-58 (hereinafter ease: Implications of Genetic Screening,” American Journal of cited as Gostin and Hodge, “Genetic Privacy.”) Medicine 93, no. 2 (1992): 209-215. Markel observes that stig- 15. R. J. Pokorski, “Use of Genetic Information by Private Insurers,” matization and ostracism of those who are found to have “unde- in T. F. Murphy and M. A. Lappé, eds., Justice and the Human sirable” traits after genetic screening could increase. Comparing Genome Project (Berkeley: University of California Press, 1994): genetic screening to quarantine, he reminds us that the healthy at 91; T. E. Morelli, “Genetic Discrimination by Insurers: Legal separated themselves from the “ill,” providing two examples of Protections Needed from Abuse of Biotechnology,” HealthSpan when genetics were applied to American social policy: the early 9, no. 8 (1992): 8-11; R. Mykitiuk and S. Penney, “Screening for 20th century movement and the 1970s screening pro- Deficits: The Legal and Ethical Implications of Genetic Screen- grams for sickle cell anemia. ing and Testing to Reduce Health Care Budgets,” Health Law 9. It should be noted that not surprisingly perhaps, interest in Jew- Journal 3 (1995): 235-268. For a comparative perspective see ish genetics has been particularly keen. Thus, for instance, the T. Lemmens, “Insurance and Human Genetics: Approaches to tradition that Kohanim (Jewish high priests of the Jerusalem Regulation” in D. N. Cooper, ed., Nature Encyclopedia of the Temple) are descended from Aaron was supported by genetic Human Genome (New York: Nature Publishing Group, 2003): testing. See Skorecki et al., “Y Chromosomes of Jewish Priests,” 495-498; T. Lemmens and P. Bahamin, “Genetics in Life, Dis- Nature 385, no. 6611 (1997): at 32. Research similarly suggests ability and Additional Health Insurance in Canada: A Compar- that a significant percentage of Ashkenazi maternal ancestry ative Legal and Ethical Analysis” in B. M. Knoppers, ed., Socio- is also of Middle Eastern origin. A 2006 study by Behar et al., Ethical Issues in Human Genetics (Montreal: Yvon Blais, 1998): based on haplotype analysis of mitochondrial DNA (mtDNA), 108-275; T. Lemmens, “Can Insurance Law Accommodate the suggested that about 40 percent of the current Ashkenazi popu- Uncertainty Associated with Preliminary Genetic Information?” lation is descended matrilineally from just four women. These Canada Bar Review 83 (2004): 357-409; B. M. Knoppers et al., four “founder lineages” were “likely from a Hebrew/Levantine “Genetics and Life Insurance in Canada: Points to Consider,” mtDNA pool” originating in the Near East in the first and second supplement to “Physicians, Genetics and Life Insurance,” Cana- centuries CE. According to the authors, “The observed global dian Medical Association Journal 170 (2004): 1421-1423, Cana- pattern of distribution renders very unlikely the possibility that dian Medical Association Web site, available at (last visited February 21, mtDNA pool via gene flow from a European host population.” 2007); T. Lemmens, “Genetics and Insurance Discrimination: See D. M. Behar et al., “The Matrilineal Ancestry of Ashkenazi Comparative Legislative, Regulatory and Policy Developments and Canadian Options,” Special Edition: Precedent and Inno-

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 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 (last visited February 21, 2007) at A24. See H. T. Greely, Neuroethics: The Neuroscience Rev- [hereinafter cited as Law]. olution, Ethics, and the Law, paper presented for the Regan 19. See G. Bernstein, “Accommodating Technological Innovation: Lecture, April 20, 2004, Markkula Center for Applied Ethics Identity, Genetic Testing and the Internet,” Vanderbilt Law Web site, available at (last oriented approach that focuses on the impact of technological visited April 10, 2007). Somewhere between 50 and 85 percent innovation on social structures, institutions, and values and on of women born with a pathogenic mutation in either of those our ability to mold these social influences by restructuring uses genes will get breast cancer; 20 to 30 percent (well under half) of new technologies: reciprocal interaction between the tech- will get ovarian cancer. nological, social, and legal spheres – our normative conceptions 30. L. Soleymani Lehmann et al., “A Population-Based Study of of identity; genetic testing and the Internet continuously alter Ashkenazi Jewish Women’s Attitudes toward Genetic Dis- the social structures through which we perceive our identity, crimination and BRCA 1/2 Testing,” Genetics in Medicine 4, thereby causing social transformation.” no. 4 (2003): at 346, 348 (observing that 13 percent of Jewish 20. R. Bhopal, “Is Research into Ethnicity and Health Racist, women surveyed feared that “that BRCA 1/2 testing will lead Unsound, or Important Science?” British Medical Journal 314 to increased anti-Semitism”). J. G. Hodge, Jr., “Health Informa- (1997): 1751-1756. tion Privacy and Public Health,” Journal of Law, Medicine & 21. T. Caulfield and G. Robertson, “Eugenic Policies in Alberta: Ethics 31, no. 4 (2003): 663-683 (hereinafter cited as Hodge, From the Systematic to the Systemic?” Alberta Law Review 35 “Health Information Privacy.”) (1996): 59-79. 31. J. K. Frizzley, “Ethical Issues in Breast Cancer Susceptibility 22. G. J. Annas, “Mapping the Human Genome and the Meaning Testing,” Health Law Review 6, no. 2 (1991): 14-23. of Monster Mythology,” Emory Law Journal 39, no. 3 (1990): 32. P. S. Florencio, “Genetics, Parenting and Children’s Rights 629-664 [hereinafter cited as Annas, “Mapping the Human in the Twenty-First Century,” McGill Law Journal 45, no. 2 Genome”]. (2000): 527-558; see generally K. C. Glass, “Research Involv- 23. T. H. Murray, “Genetic Exceptionalism and ‘Future Diaries’: ing Humans” in J. Downie, T. Caulfield, and C. M. Flood, eds., Is Genetic Information Different from Other Medical Infor- Canadian Health Law and Policy 2nd ed. (Toronto: Butter- mation” in M. A. Rothstein, ed., Genetic Secrets: Protecting worths Canada, 2002): 459-500; E. J. Emanuel et al., eds., Privacy and Confidentiality in the Genetic Era (New Haven: Ethical and Regulatory Aspects of Clinical Research: Readings Yale University Press, 1997): at 60. See also M. A. Rothstein, and Commentary (Baltimore, MD: Johns Hopkins University “Genetic Privacy and Confidentiality: Why They Are So Hard Press, 2003): 297; S. Krimsky, “Human Gene Therapy: Must to Protect,” Journal of Law, Medicine & Ethics 26, no. 3 (1998): We Know Where to Stop Before We Begin,” Human Gene Ther- 198-204. apy 1, no. 2 (1990): 71-173. 24. L. Gannett, “Racism and Human Genome Research: 33. A. Goldworth, “Informed Consent in the Genetic Age,” Cam- The Ethical Limits of ‘Population Thinking,’” Philosophy of bridge Quarterly of Healthcare Ethics 8 (1999): 393-400. For Science 68 (2001): S479. Gannett’s article raises concerns of example, Goldworth focuses on the importance of autonomy racism in the Human Genome Diversity Project by UNESCO, and the need to give informed consent. noting that the medical information obtained thereby could be 34. See Stolberg, supra note 29. misused by people seeking to propagate racism. 35. See Annas, “Mapping the Human Genome,” supra note 22.

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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 conducted by A. Meyer-Lindenberg et al., “Neural Mechanisms (last visited February 21, 2007). In the same vein, see T. A. of Genetic Risk for Impulsivity and Violence in Humans,” Pro- Caulfield, M. M. Burgess, and B. Williams-Jones, “Providing ceedings of the National Academy of Sciences of the United Genetic Testing through the Private Sector – A View from Can- States of America 103, no. 16 (2006): 6269-6274 [hereinafter ada,” Canadian Journal of Policy Research 2, no. 3 (2001): 72- cited as Meyer-Lindenberg, “Neural Mechanisms”]. “Our data 81, Canadian Journal of Policy Research Web site, available at identify differences in limbic circuitry for emotion regulation and cognitive control that may be involved in the association of (last visited February 21, 2007). The authors observe: “Genetic MAOA with impulsive aggression, suggest neural systems-level testing technologies are rapidly moving from the research labo- effects of X-inactivation in human brain, and point toward ratory to the market place. Very little scholarship considers the potential targets for a biological approach toward violence.” See implications of private genetic testing for a public health care also Andreas Meyer-Lindenberg et al., “Neural Correlates of system such as Canada’s. It is critical to consider how and if Genetically Abnormal Social Cognition in Williams Syndrome,” these tests should be marketed to, and purchased by, the pub- Nature Neuroscience 8, no. 8 (2005): 991-993, Unit for Systems lic. It is also imperative to evaluate the extent to which genetic Neuroscience in Psychiatry Web site, available at system, and the impact of allowing a two-tiered system for (last visited February 21, 2007). genetic testing. A series of threshold tests are presented as 38. See N. Hudson, “The Race Debate,” The Globe and Mail, June ways of clarifying whether a genetic test is morally appropri- 20, 2005, at A18. “The term ‘race,’ understood as a label for ate, effective and safe, efficient and appropriate for public large groups characterized by traits such as skin colour, did funding and whether private purchase poses special problems not emerge until the late 18th century when it was coined by and requires further regulation. These thresholds also identify scientists Georges-Louis Leclerc Buffon and Johann Friedrich the research questions around which professional, public and Blumenbach.” policy debate must be sustained: What is a morally acceptable 39. S. Soo-Jin Lee, J. Mountain, and B. A. Koenig, “The Meanings goal for genetic services? What are the appropriate benefits? of ‘Race’ in the New Genomics: Implications for Health and What are the risks? When is it acceptable that services are not Disparities Research,” Yale Journal of Health Policy, Law, and funded under health care? And how can the harms of private Ethics 1 (2001): at 33-75, at 60. access be managed?”; see also N. A. Holtzman, “The U.K.’s Pol- 40. See J. Burley, ed., The Genetic Revolution and Human Rights: icy on Genetic Testing Services Supplied Direct to the Public The Oxford Amnesty Lectures 1998 (Oxford: Oxford Univer- – Two Spheres and Two Tiers,” Community Genetics 1, no. 1 sity Press, 1999). See also R. E. Howard-Hassmann, “Cana- (1998): at 48-52, at 49; and T. A. Caulfield and B. Williams- dians Discuss Freedom of Speech: Individual Rights Versus Jones, eds., The Commercialization of Genetic Research: Ethi- Group Protection,” International Journal on Minority and cal, Legal and Policy Issues (New York: Kluwer Academic/Ple- Group Rights 7, no. 2 (2000): 109-138. Although the focus of num Publishers, 1999): at 181. this particular piece is freedom of expression, its discussion of 50. The Honorable Robert K. Rae, “The Courts and Group Rights individual versus group rights, with particular respect to vul- in Canada,” Saint Louis University Law Journal 42 (1997): nerable groups, is relevant. 539-544. See Law, supra note 18. 41. See also D. L. Wiesenthal and N. I. Wiener, “Privacy and the 51. The provinces that have created a statutory tort of invasion ,” Ethics and Behavior 6, no. 3 (1996): of privacy are the following: British Columbia (Privacy Act, 189-202. R.S.B.C. 1979, c. 336); Manitoba (The Privacy Act, R.S.M. 42. R. S. Schwartz, “Racial Profiling in Medical Research,” New 1987, c. P125); Newfoundland (Privacy Act, R.S.N.L. 1990, c. England Journal of Medicine 44, no. 18 (2001): 1392-1393; P-22); Saskatchewan (The Privacy Act, R.S.S. 1978, c. P-24). see Annas, supra note 14. Annas argues Federal protections The Courts have left the door open for a general American- are lacking. style privacy tort and have not rejected it as in England. For a 43. B. M. Knoppers, “Human Genetics: Parental, Professional and broader discussion, see J. D. R. Craig, “Invasion of Privacy and Political Responsibility,” Health Law Journal 1 (1993): 13-23. Charter Values: The Common-Law Tort Awakens,” McGill Law 44. At the state level only, as addressed infra. For a more detailed Journal 42, no. 2 (1997): 355-496. discussion see S. Hoffman, “Legislation and Genetic Discrimi- 52. L. K. Bennett Moses, “A Family Affair: Sharing Information nation,” Journal of Law and Health 16 (2001): 47-51. about Genetic Diseases,” 2003, Berkeley Electronic Press Legal 45. See Gostin and Hodge, supra note 14. Repository Web site, available at (last visited Code: The Need for Enhanced Privacy Protections in the February 21, 2007). United States and Canada to Prevent Employment Discrimina- 53. And therefore will not be repeated therein. See e.g., Doe v. tion based on Genetic and Health Information,” Osgoode Hall High-Tech Institute, Inc., 972 P.2d 1060, 1064 (Colo. Ct. App. Law Journal 39 (2001): 77-116. 1998) at 1071 holding that “[a]n unauthorized HIV test, under 47. Lemmens forcefully argues that anti-discrimination legislation the circumstances as set forth in plaintiff’s complaint, would is not necessarily required as it is doubtful that genetic infor- be considered by a reasonable person as highly invasive, and mation can be demarcated from other health related data for therefore, such is sufficient to constitute an unreasonable or purposes of insurance, for instance: “It is debatable whether offensive intrusion….” The court also held that “there is a gen- genetic information is sufficiently distinct from other medical erally recognized privacy interest in a person’s body. Because information as to justify its special treatment by the law, such personal information concerning a person’s health may be as through the enactment of specific genetic privacy and anti- obtained through one’s blood, urine and other bodily products, discrimination legislation.” (See Lemmens, supra note 15, at 83). such products cannot be extracted from a person or initially 48. In Canada, the only legislation that deals directly with genetic tested without either consent or proper authorization.” Id., at information, outside of the DNA warrants and other criminal 1068. law stuff in the Code, are the provisions dealing with human 54. Very roughly, PIPEDA (Personal Information Protection and cloning in the Assisted Human Reproduction Act, R.S.C. 2004 Electronic Documents Act, R.S.C. 2000, c. 5), regulates the col- c. 2, s. 40. lection, use and disclosure of personal information by commer- 49. This is of particular concern in light of what is described as cial organizations that are federally regulated. It also provides the likely expansion of the private market for genetic testing. individuals with a right of access to information held about

292 journal of law, medicine & ethics Karen Eltis

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 (last visited March 13, 2007). Union and the United States,” American Business Law Journal 57. Id. 43, no. 1 (2006): 79-171, at 132. 58. Id. 75. N. Kling, S. Pillay, and G. A. Lasprograta, “Workplace Privacy 59. See M. J. Malinowski and R. Rao, “Legal Limitations on and Discrimination Issues Relating to Genetic Data: A Compar- Genetic Research and the Commercialization of Its Results,” ative Law Study of the European Union and the United States,” American Journal of Comparative Law 54 (2006): at 45-67, 51. American Business Law Journal 43, no. 1 (2006): 79-171, at Aside from the ban on federally-funded HESCR, there are no 135: “One significant drawback of HIPAA in terms of protect- federal laws (human embryonic stem cells). ing the privacy of applicants’ and employees’ genetic informa- 60. Most notably by the National Bioethics Advisory Commission tion is that it does not apply to employers acting as employers, and the National Academy of Sciences. even if the employers are also sponsors of self-insured health 61. While the Equal Protection Clause is a Fourteenth Amendment insurance plans that cover employees.” restriction on the states rather than the federal government, 76. Standardsfor Privacy of Individually Identifiable Health Infor- the Due Process Clause of the Fifth Amendment has been read mation, 67 Fed. Reg. 65,82,462 (2000) (codified as amended to house an equal protection principle applicable to the federal at 45 C.F.R. Parts 160, 164). government identical to that of targeting the states. 77. See e.g., CA Gov’t Code § 12940(o), California State Person- 62. Norman-Bloodsaw v. Lawrence Berkeley Laboratory, 135 F.3d nel Board Web site, available at (last visited 63. See E. Lin, “Prioritizing Privacy: A Constitutional Response February 22, 2007); Conn. Gen. Stat. Ann. § 46a-60(11)(A) to the Internet,” Berkeley Technology Law Journal 17 (2002): (West 2004); Del. Code Ann. tit. 19, § 711(e) (Supp. 2004); at 1085-1154, at 1150: “[T]he federal constitution is firmly N.Y. Exec. Law § 296.19(a)(1) (McKinney 2004). entrenched in the concept that constitutional rights apply 78. National Conference of State Legislatures, Genetics and Health only against state actors.” Only California’s state constitution Insurance State Anti-Discrimination Laws, National Confer- protects employees from rights infringements in private work- ence of State Legislatures Web site, available at (last visited Francisco, 64 Cal. App. 3d 825, 829 (Cal. Ct. App. 1976). February 22, 2007) regarding state genetics and health insur- 64. See Raday, supra note 34. See also F. Macdonald, “Postscript ance laws. See also National Conference of State Legislatures, and Prelude: The Jurisprudence of the Charter: Eight Theses,” State Genetics Employment Laws, National Conference of State Supreme Court Law Review 4 (1982): 321 -350, at 347. Legislatures Web site, available at (last visited February Employment Based on Genetic Information,” Federal Register 22, 2007) regarding state genetics and employment laws. 6875, United States Equal Employment Opportunity Commis- 79. Irwin Cotler refers to human rights as the “secular religion of sion Web site, available at (last visited February 22, 2007). Justice 38 (2004): at 24-30, at 27. 66. See Simitis, supra note 1. 80. The root of genetic discrimination is what George Annas has 67. Id. dubbed “genism,” which he defines as “the theory that distinc- 68. Id. tive human characteristics and abilities are determined by 69. The latter group is precluded using genetic information to do genes.” the following: “[D]ischarge, fail or refuse to hire, or otherwise 81. With respect to women particularly, see F. Miller et al., eds., discriminate against any employee with respect to the compen- The Gender of Genetic Futures: The Canadian Biotechnology sation, terms, conditions, or privileges or employment of that Strategy, Women and Health. Proceedings of a National Stra- employee, because of protected genetic information with respect tegic Workshop Held at York University, February 11-12, 2000 to the employee, or because of information about a request for (Toronto: York University, 2000), National Network on Envi- or the receipt of genetic services by such employee.” ronments and Women’s Health Web site, available at (last visited February 22, 2007). Sullivan, “The Law and Genetics of Racial Profiling in Medi- 82. As was the case of the above-cited Montreal psychiatrist. As cine,” Harvard Civil Rights and Civil Liberties Law Review 39, Barondess warns, “[w]e face the possibility of a new eugenics no. 2 (2004): 391-483. that is immensely more powerful because it is based on valid 71. Civil Rights Act, 42 U.S.C. §§ 2000e to 2000e-17 (2000). science.” See Barondess, supra note 8. 72. See J. A. Feldman and R. J. Katz, “Genetic Testing and Dis- 83. See Hudson, supra note 38. crimination in Employment: Recommending a Uniform Statu- 84. Id. tory Approach,” Hofstra Labor and Employment Law Journal 85. For a more detailed reflection on the trust accorded scientists 19, no. 2 (2002): at 389-429, at 392. Outside the employment from a sociology perspective, see K. M. Leisinger, “Science context, of course, Title II would enjoy default application, and Public Trust,” lecture presented to the Engelberg Forum, prohibiting discrimination or segregation in a place of public October 2002, Novartis Foundation for Sustainable Develop- accommodation. ment Web site, available at (last visited February 74. The ADA defines “disability” as the following: “a physical or 22, 2007). mental impairment that substantially limits one or more of 86. See J.-P. Rogel, Genetique et Medias: Histoire d’un Malen- the major life activities of such individual; a record of such an tendu? (Genetics and the Media: A Case of Misunderstanding?) impairment; or being regarded as having such an impairment.” paper presented to When Science Becomes Culture Interna- In March 1995, the EEOC interpreted the definition of “dis- tional Symposium, April 1994, Centre interuniversitaire de ability” as applying to individuals who have been subjected to recherche sur la science et la technologie Web site, available discrimination based on genetic information related to illness, at

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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 (last visited Febru- astutely observe, at the zenith of its “prestige,” its scientific ary 22, 2007). accuracy, paradoxically, is not. These leading researchers, par- 89. B. M. Knoppers, “Overview of Law and Policy Challenges,” Spe- ticularly Nobel laureate Sir Sulston, urge the development of cial Issue, Louisiana Law Review 66 (2005): 21-31. a moral and legal “compass” to inject equity into the further- 90. See Gannett, supra note 24. See also Duster, supra note 87. ance of genomic knowledge. (See Harris and Sulston, supra 91. J. C. Hoeffel, “The Dark Side of DNA Profiling: Unreliable Sci- note 99). entific Evidence Meets the Criminal Defendant,” Stanford Law 102. A professor of speech communication at the University of Review 42, no. 2 (1990): 465-492. Georgia who specializes in biomedical issues. 92. A related issue is the growing enthusiasm for drugs that are 103. Condit argues: “Usually scientists are very careful in develop- tailored for use with specific racial or ethnic groups. This con- ing their technical vocabulary. But it’s hard to describe the cept is based on the problematic assumption that race can be geographic dispersion of people properly – and they have used as a visible marker for a certain , an assumption these easy [racial] terms in their heads.” Quoting Carolyn that is bound to be false in some cases and could lead to ste- Abraham: “Despite the long and ugly social history of race, reotyping with serious health implications. Studies have shown there is no clear-cut definition for the term. Is a person’s that existing drugs for treatment of cardiac patients were not race defined by skin colour, that most visible of markers? By effective in African Americans. See e.g., D. V. Exner et al., language, country of birth, the food they eat or the religion “Lesser Response to Angiotensin-Converting-Enzyme Inhibi- they practice? Not even scientists can agree…[i]f you have a tor Therapy in Black as Compared with White Patients with [genetic] sample from Nigeria, can you really say that it rep- Left Ventricular Dysfunction,” New England Journal of Medi- resents Africans? Is that the same as African Americans? [In cine 344, no. 18 (2001): 1351-1357. For a good review, see R. some studies], Jews are white, sometimes they’re not. Some- S. Cooper, J. S. Kaufman, and R. Ward, “Race and Genomics,” times they’re compared to Caucasians.” C. Abraham, “Race,” New England Journal of Medicine 348, no. 12 (2003): 1166- The Globe and Mail, June 18, 2005, at F1. See also C. Con- 1170. See J. Kahn, “How a Drug Becomes ‘Ethnic’: Law, Com- dit et al., “Psycho-social, Clinical and Scientific Barriers to merce, and the Production of Racial Categories in Medicine,” Race-Based Genetic Medicine?” 2004, University of Georgia Yale Journal of Health Policy, Law and Ethics 4, no. 1 (2004): Biomedical and Health Sciences Institute Web site, available 1-46, for a very interesting discussion of how the FDA subse- at quently approved a “new” drug exclusively for use in African (last visited February 22, 2007). Americans, essentially allowing the drug company to extend 104. E. M. Petty and S. R. Kardia et al., “, Race patent protection on an existing drug. If these kinds of drugs and Culture,” Journal of Law, Medicine & Ethics 29, no. 2, continue to be developed, it could lead to a surge in the num- Supplement (2001): 39-43. ber of individuals seeking testing, which in turn could further 105. S. Simitis, Legal Limitations on Genetic Research and the enhance the idea in the general population that cardiovascular Commercialisation of Its Results, paper presented at the XVI- disease in African Americans is entirely genetic, when in fact Ith International Academy of Comparative Law’s Conference it is just as likely to be the result of poor diet and other social in Utrecht, July 17, 2006. determinants of health factors related to systematic 106. Loi du 6 aout 2004. For an in-depth discussion of the French and poverty. legal approach to genetic research, see F. Belliver et al., Les 93. Y. Ofran, “What Can We (and What Can’t We) Infer from limitations legales de la recherché genetique et de la commer- Biological Information (2005),” University of Haifa Faculty cialization de ses resultats: la droit francais, (The Legal Lim- of Law Web site, available at (last visited Febru- French Law), report prepared for the International Academy ary 22, 2007). of Comparative Law Conference, Utrecht, July 17, 2006 avail- 94. See Meyer-Lindenberg, supra note 37: “Our data identify dif- able at (last vis- ferences in limbic circuitry for emotion regulation and cogni- ited March 13, 2007). tive control that may be involved in the association of MAOA

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