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

Simitis S. , “Reviewing Privacy in an Information Society,” University of Pennsylvania Law Review 135 (1987): 707–740, at 709.

Juengst E. T. , “FACE Facts: Why Human Genetics Will Always Provoke Bioethics,” Journal of Law, Medicine & Ethics 32, no. 2 (2003): 267–275, at 270–272.

Labman S. , “Genetic Prophecies: The Future of the Canadian Workplace,” Manitoba Law Journal 30, no. 2 (2004): 227–247. Labman provides the example of a company that screened only African Americans for sickle-cell anemia indicators. The FDA also approved a drug exclusively tailored to African Americans; see Saul S. , “FDA Approves a Heart Drug for African Americans,” New York Times, June 24, 2005, at C2. For a thorough discussion and critique of the advent of “race-based medicine” and medical “racial profiling,” see Hoffman S. , “Racially-Tailored Medicine Unraveled,” American University Law Review 55 (2005): 395–452, available at <http://www.wcl.american.edu/journal/lawrev/55/hoffman.pdf?rd=1> (last visited February 21, 2007).

See e.g., Berlin I. , “Two Conceptions of Liberty” in Four Essays on Liberty (Oxford: Oxford University Press, 1969).

CTV.ca News Staff, “Quebec Radio Shrink Sparks Complaints of Racism,” September 29, 2005, available at <http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20050928/mailloux_defends_050928/20050928?hub=Canada> (last visited February 21, 2007).

Id. On September 25, 2005, Pierre Mailloux suggested on his French-language program, broadcast by radio station CKAC, that the artificial selection inherent to slavery left black and Native North Americans with an intellectual deficit: “Those blacks who were too intelligent, too tricky, they were slaughtered,” Mailloux said. “It's the consequence of an artificial selection. They can run faster, they're stronger, but their IQs are consistently lower.”7. Cochran G. Hardy J. Harpending H. , “Natural History of Ashkenazi Intelligence,” Journal of Biosocial Science 35, no. 5 (2006): 659–693, available at <http://homepage.mac.com/harpend/.Public/AshkenaziIQ.jbiosocsci.pdf> (last visited February 21, 2007).

See Barondess J. A. , “Care of the Medical Ethos, with Some Comments on Research: Reflections after the Holocaust,” Perspectives in Biology and Medicine 43, no. 3 (2000): 308–324. As Green note, “Historically, genetic information has been used to discriminate against individuals and groups, particularly Jews and other minorities.” See Markel H. , “The Stigma of Disease: Implications of Genetic Screening,” American Journal of Medicine 93, no. 2 (1992): 209–215. Markel observes that stigmatization and ostracism of those who are found to have “undesirable” traits after genetic screening could increase. Comparing genetic screening to quarantine, he reminds us that the healthy separated themselves from the “ill,” providing two examples of when genetics were applied to American social policy: The early 20th century eugenics movement and the 1970s screening programs for sickle cell anemia.

It should be noted that not surprisingly perhaps, interest in Jewish genetics has been particularly keen. Thus, for instance, the tradition that Kohanim (Jewish high priests of the Jerusalem Temple) are descended from Aaron was supported by genetic testing. See Skorecki , “Y Chromosomes of Jewish Priests,” Nature 385, no. 6611 (1997): At 32. Research similarly suggests that a significant percentage of Ashkenazi maternal ancestry is also of Middle Eastern origin. A 2006 study by Behar , based on haplotype analysis of mitochondrial DNA (mtDNA), suggested that about 40 percent of the current Ashkenazi population is descended matrilineally from just four women. These four “founder lineages” were “likely from a Hebrew/Levantine mtDNA pool” originating in the Near East in the first and second centuries CE. According to the authors, “The observed global pattern of distribution renders very unlikely the possibility that the four aforementioned founder lineages entered the Ashkenazi mtDNA pool via gene flow from a European host population.” See Behar D. M. , “The Matrilineal Ancestry of Ashkenazi Jewry: Portrait of a Recent Founder Event,” The American Journal of Human Genetics 78 (2006): 487–497.

Summers ultimately resigned. See Letter from L. H. Summers, “Harvard University: The Office of the President,” February 21, 2006, available at <http://www.president.harvard.edu/speeches/2006/0221_summers.html> (last visited February 21, 2007).

In Summers' January 14 remarks, he proposed that innate genetic differences between the sexes may be one explanation for why fewer women succeed in math and science careers. See National Organization for Women, Press Release, NOW Calls for Resignation of Harvard University's President , January 20, 2005, National Organization for Women Web site, available at <http://www.now.org/press/01–05/01–20-Harvard.html> (last visited February 21, 2007).

See Zilinskas R. A. Balint P. J. , eds., The Human Genome Project and Minority Communities: Ethical, Social and Political Dilemmas (Westport, CT: Praeger, 2001).

Rothstein M. A. , ed., Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era (New Haven: Yale University Press, 1997).

Epstein R. A. , “The Legal Regulation of Genetic Discrimination: Old Responses to New Technology,” Boston University Law Review 74 (1994): 1–23; see Green R. M. Thomas A. M. , “DNA: Five Distinguishing Features for Policy Analysis,” Harvard Journal of Law and Technology 11, no. 3 (1998): 571–591. Green and Thomas state: “[T]he influx of genetic science into biomedicine and research raises the question of whether predictive or diagnostic information derived from the molecular analysis of DNA merit distinctive legal consideration or policy treatment.” See Diver C. S. Maslow Cohen J. , “Genophobia: What is Wrong with Genetic Discrimination?” University of Pennsylvania Law Review 149, no. 5 (2001): 1439–1482. See also Annas G. J. , “Genetic Prophecy and Genetic Privacy – Can We Prevent the Dream from Becoming a Nightmare?” American Journal of Public Health 85, no. 9 (1995): 1996–7 [hereinafter cited as Annas , “Genetic Prophecy”]. Annas believes that genetic information is “uniquely private and personal” for three reasons: “It can predict an individual's likely medical future; it divulges personal information about one's parents, siblings, and children; and it has a history of being used to stigmatize and victimize individuals.” See also Gostin L. O. Hodge J. G. Jr. , “Genetic Privacy and the Law: An End to Genetic Exceptionalism,” Jurimetrics 40, no. 1 (1999): 21–58 (hereinafter cited as Gostin Hodge , “Genetic Privacy.”)

Pokorski R. J. , “Use of Genetic Information by Private Insurers,” in Murphy T. F. Lappé M. A. , eds., Justice and the Human Genome Project (Berkeley: University of California Press, 1994): At 91; Morelli T. E. , “Genetic Discrimination by Insurers: Legal Protections Needed from Abuse of Biotechnology,” HealthSpan 9, no. 8 (1992): 8–11; Mykitiuk R. Penney S. , “Screening for Deficits: The Legal and Ethical Implications of Genetic Screening and Testing to Reduce Health Care Budgets,” Health Law Journal 3 (1995): 235–268. For a comparative perspective see Lemmens T. , “Insurance and Human Genetics: Approaches to Regulation” in Cooper D. N. , ed., Nature Encyclopedia of the Human Genome (New York: Nature Publishing Group, 2003): 495–498; Lemmens T. Bahamin P. , “Genetics in Life, Disability and Additional Health Insurance in Canada: A Comparative Legal and Ethical Analysis” in Knoppers B. M. , ed., Socio-Ethical Issues in Human Genetics (Montreal: Yvon Blais, 1998): 108–275; Lemmens T. , “Can Insurance Law Accommodate the Uncertainty Associated with Preliminary Genetic Information?” Canada Bar Review 83 (2004): 357–409; Knoppers B. M. , “Genetics and Life Insurance in Canada: Points to Consider,” supplement to “Physicians, Genetics and Life Insurance,” Canadian Medical Association Journal 170 (2004): 1421–1423, Canadian Medical Association Web site, available at <http://www.cmaj.ca/cgi/data/170/9/1421/DC2/1> (last visited February 21, 2007); Lemmens T. , “Genetics and Insurance Discrimination: Comparative Legislative, Regulatory and Policy Developments and Canadian Options,” Special Edition: Precedent and Innovation: Health Law in the 21st Century, Health Law Journal, Special Supplement 41 (2003); Lemmens T. , “Selective Justice, Genetic Discrimination and Insurance: Should We Single Out Genes in Our Laws?” McGill Law Journal 45, no. 2 (2000): 347–412 [hereinafter cited as Lemmens , “Selective Justice”].

Miller P. S. , “Is There a Pink Slip in My Genes? Genetic Discrimination in the Workplace,” Journal of Health Care Law and Policy 3 (2000): 225–265; Miller P. S. , “Genetic Discrimination in the Workplace,” Journal of Law, Medicine & Ethics 26, no. 3 (1998): 189–197; Miller P. S. , “Analysing Genetic Discrimination in the Workplace” in Krimsky S. Shorett P. , eds., Rights and Liberties in the Biotech Age: Why We Need a Genetic Bill of Rights (Lanham, MD: Rowman & Littlefield, 2005): 173–178; Andrews L. B. Mehlman M. J. Rothstein M. , Genetics: Ethics, Law & Policy (St. Paul, MN: West Publishing, 2002); Miller P. S. , “Commentary: Genetic Discrimination in the Workplace,” Genetics in Medicine 3, no. 3 (2001): 165–168; Natowicz M. R. Alper J. K. Alper J. S. , “Genetic Discrimination and the Law,” American Journal of Human Genetics 50 (1992): 465–475.

Hellman D. , “What Makes Genetic Discrimination Exceptional?” American Journal of Law and Medicine 29 (2003): 77–116; Miller P. S. , “Genetic Discrimination: Does It Exist? What Are Its Implications?” Journal of Law and Health 16 (2001): 39–45; see generally, Lemmens T. Waring D. R. , eds., Law and Ethics in Biomedical Research: Regulation, Conflict of Interest, and Liability (Toronto: University of Toronto Press, 2006). See also Gostin L. O. Hodge J. G. Jr. , “Personal Privacy and Common Goods: A Framework for Balancing under the National Health Information Privacy Rule,” Minnesota Law Review 86 (2002): 1439–1479.

Lawv. Canada (Minister of Employment and Immigration), 1 S.C.R. 497 at paragraph 16 (1999), Canadian Legal Information Institute Web site, available at <http://www.canlii.org/ca/cas/scc/1999/1999scc17.html> (last visited February 21, 2007) [hereinafter cited as Law].

See Bernstein G. , “Accommodating Technological Innovation: Identity, Genetic Testing and the Internet,” Vanderbilt Law Review 57, no. 3 (2004): 963–1037. Bernstein suggests “a socially oriented approach that focuses on the impact of technological innovation on social structures, institutions, and values and on our ability to mold these social influences by restructuring uses of new technologies: Reciprocal interaction between the technological, social, and legal spheres – our normative conceptions of identity; genetic testing and the Internet continuously alter the social structures through which we perceive our identity, thereby causing social transformation.”20. Bhopal R. , “Is Research into Ethnicity and Health Racist, Unsound, or Important Science?” British Medical Journal 314 (1997): 1751–1756.

Caulfield T. Robertson G. , “Eugenic Policies in Alberta: From the Systematic to the Systemic?” Alberta Law Review 35 (1996): 59–79.

Annas G. J. , “Mapping the Human Genome and the Meaning of Monster Mythology,” Emory Law Journal 39, no. 3 (1990): 629–664 [hereinafter cited as Annas , “Mapping the Human Genome”].

Murray T. H. , “Genetic Exceptionalism and ‘Future Diaries’: Is Genetic Information Different from Other Medical Information” in Rothstein M. A. , ed., Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era (New Haven: Yale University Press, 1997): At 60. See also Rothstein M. A. , “Genetic Privacy and Confidentiality: Why They Are So Hard to Protect,” Journal of Law, Medicine & Ethics 26, no. 3 (1998): 198–204.

Gannett L. , “Racism and Human Genome Diversity Research: The Ethical Limits of ‘Population Thinking,’” Philosophy of Science 68 (2001): S479. Gannett's article raises concerns of racism in the Human Genome Diversity Project by UNESCO, noting that the medical information obtained thereby could be misused by people seeking to propagate racism.

See Green Thomas , supra note 14, at 584–585. Significantly, this discussion ultimately similarly turns to insurance and employment considerations as well: “For example, recent breast cancer research in the Ashkenazic Jewish community suggests that a BRCA mutation potentially predisposing one to breast and ovarian cancer exists in over two percent of this population. Since a majority of carriers have a 586 mutation detectable by standard molecular techniques, it is possible to identify women with the mutation. While researchers are only beginning to understand the long term benefits of this discovery, the immediate repercussions might be externally or internally imposed discrimination against women of Ashkenazic heritage. External discrimination may result from mandatory screening of Jewish females. Those found to have the mutation, or even untested but suspected members of the group, might be denied employment or insurance because of apprehensions about their health status.” Id., at 586–587.

Becker S. , “Constitutional Classifications and the ‘Gay Gene,’” Journal of Law and Health 16, no. 1 (2001): 27–32.

For a general discussion see Dickens B. M. Pei N. Taylor K. M. , “Legal and Ethical Issues in Genetic Testing and Counseling for Susceptibility to Breast, Ovarian and Colon Cancer,” Canadian Medical Association Journal 154, no. 6 (1996): 813–818.

Considered to be a side effect of genes selected for their role in boosting brain function – a thesis set forth in the above-cited research; see Cochran Hardy Harpending , supra note 7. See also Labman , supra note 3. The article discusses people's reticence to participate in ‘genetic’ cancer research studies for fear of being stigmatized as having a predisposition towards cancer. See also Green Thomas , supra note 14, at 586–587.

Stolberg S. G. , “Concern Among Jews Is Heightened as Scientists Deepen Gene Studies,” New York Times, April 22, 1998, at A24. See Greely H. T. , Neuroethics: The Neuroscience Revolution, Ethics, and the Law , paper presented for the Regan Lecture, April 20, 2004, Markkula Center for Applied Ethics Web site, available at <http://www.scu.edu/ethics/publications/submitted/greely/neuroscience_ethics_law.html> (last visited April 10, 2007). Somewhere between 50 and 85 percent of women born with a pathogenic mutation in either of those genes will get breast cancer; 20 to 30 percent (well under half) will get ovarian cancer.

Soleymani Lehmann L. , “A Population-Based Study of Ashkenazi Jewish Women's Attitudes toward Genetic Discrimination and BRCA 1/2 Testing,” Genetics in Medicine 4, no. 4 (2003): At 346, 348 (observing that 13 percent of Jewish women surveyed feared that “that BRCA 1/2 testing will lead to increased anti-Semitism”). Hodge J. G. Jr. , “Health Information Privacy and Public Health,” Journal of Law, Medicine & Ethics 31, no. 4 (2003): 663–683 (hereinafter cited as Hodge , “Health Information Privacy.”)

Frizzley J. K. , “Ethical Issues in Breast Cancer Susceptibility Testing,” Health Law Review 6, no. 2 (1991): 14–23.

Florencio P. S. , “Genetics, Parenting and Children's Rights in the Twenty-First Century,” McGill Law Journal 45, no. 2 (2000): 527–558; see generally Glass K. C. , “Research Involving Humans” in Downie J. Caulfield T. Flood C. M. , eds., Canadian Health Law and Policy 2nd ed. (Toronto: Butterworths Canada, 2002): 459–500; Emanuel E. J. , eds., Ethical and Regulatory Aspects of Clinical Research: Readings and Commentary (Baltimore, MD: Johns Hopkins University Press, 2003): 297; Krimsky S. , “Human Gene Therapy: Must We Know Where to Stop Before We Begin,” Human Gene Therapy 1, no. 2 (1990): 71–173.

Goldworth A. , “Informed Consent in the Genetic Age,” Cambridge Quarterly of Healthcare Ethics 8 (1999): 393–400. For example, Goldworth focuses on the importance of autonomy and the need to give informed consent.

See Stolberg , supra note 29.

See Annas , “Mapping the Human Genome,” supra note 22.

Witzig R. , “The Medicalization of Race: Scientific Legitimization of a Flawed Social Construct,” Annals of Internal Medicine 125 (1996): 675–9.

Regarding impulsive violence, see the groundbreaking research conducted by Meyer-Lindenberg A. , “Neural Mechanisms of Genetic Risk for Impulsivity and Violence in Humans,” Proceedings of the National Academy of Sciences of the United States of America 103, no. 16 (2006): 6269–6274 [hereinafter cited as Meyer-Lindenberg , “Neural Mechanisms”]. “Our data identify differences in limbic circuitry for emotion regulation and cognitive control that may be involved in the association of MAOA with impulsive aggression, suggest neural systems-level effects of X-inactivation in human brain, and point toward potential targets for a biological approach toward violence.” See also Meyer-Lindenberg Andreas , “Neural Correlates of Genetically Abnormal Social Cognition in Williams Syndrome,” Nature Neuroscience 8, no. 8 (2005): 991–993, Unit for Systems Neuroscience in Psychiatry Web site, available at <http://snp.nimh.nih.gov/Papers/Nature%20Neuroscience%202005c.pdf> (last visited February 21, 2007).

See Hudson N. , “The Race Debate,” The Globe and Mail, June 20, 2005, at A18. “The term ‘race,’ understood as a label for large groups characterized by traits such as skin colour, did not emerge until the late 18th century when it was coined by scientists Georges-Louis Leclerc Buffon and Johann Friedrich Blumenbach.”39. Soo-Jin Lee S. Mountain J. Koenig B. A. , “The Meanings of ‘Race’ in the New Genomics: Implications for Health and Disparities Research,” Yale Journal of Health Policy, Law, and Ethics 1 (2001): At 33–75, at 60.

See Burley J. , ed., The Genetic Revolution and Human Rights: The Oxford Amnesty Lectures 1998 (Oxford: Oxford University Press, 1999). See also Howard-Hassmann R. E. , “Canadians Discuss Freedom of Speech: Individual Rights Versus Group Protection,” International Journal on Minority and Group Rights 7, no. 2 (2000): 109–138. Although the focus of this particular piece is freedom of expression, its discussion of individual versus group rights, with particular respect to vulnerable groups, is relevant.

See also Wiesenthal D. L. Wiener N. I. , “Privacy and the Human Genome Project,” Ethics and Behavior 6, no. 3 (1996): 189–202.

Schwartz R. S. , “Racial Profiling in Medical Research,” New England Journal of Medicine 44, no. 18 (2001): 1392–1393; see Annas , supra note 14. Annas argues Federal protections are lacking.

Knoppers B. M. , “Human Genetics: Parental, Professional and Political Responsibility,” Health Law Journal 1 (1993): 13–23.

At the state level only, as addressed infra. For a more detailed discussion see Hoffman S. , “Legislation and Genetic Discrimination,” Journal of Law and Health 16 (2001): 47–51.

See Gostin Hodge , supra note 14.

Id. See also Florencio P. S. Ramanathan E. D. , “Secret Code: The Need for Enhanced Privacy Protections in the United States and Canada to Prevent Employment Discrimination based on Genetic and Health Information,” Osgoode Hall Law Journal 39 (2001): 77–116.

Lemmens forcefully argues that anti-discrimination legislation is not necessarily required as it is doubtful that genetic information can be demarcated from other health related data for purposes of insurance, for instance: “It is debatable whether genetic information is sufficiently distinct from other medical information as to justify its special treatment by the law, such as through the enactment of specific genetic privacy and anti-discrimination legislation.” (See Lemmens , supra note 15, at 83).

In Canada, the only legislation that deals directly with genetic information, outside of the DNA warrants and other criminal law stuff in the Code, are the provisions dealing with human cloning in the Assisted Human Reproduction Act, R.S.C. 2004 c. 2, s. 40.

This is of particular concern in light of what is described as the likely expansion of the private market for genetic testing. For a more detailed discussion see Williams-Jones B. , “Private Genetic Testing in Canada: A Summary,” Health Law Review 9 (2001): 10, Health Law Institute Web site, available at <http://www.law.ualberta.ca/centres/hli/pdfs/hlr/v9_3/brynfrm.pdf> (last visited February 21, 2007). In the same vein, see Caulfield T. A. Burgess M. M. Williams-Jones B. , “Providing Genetic Testing through the Private Sector – A View from Canada,” Canadian Journal of Policy Research 2, no. 3 (2001): 72–81, Canadian Journal of Policy Research Web site, available at <http://www.isuma.net/v02n03/caulfield/caulfield_e.shtml> (last visited February 21, 2007). The authors observe: “Genetic testing technologies are rapidly moving from the research laboratory to the market place. Very little scholarship considers the implications of private genetic testing for a public health care system such as Canada's. It is critical to consider how and if these tests should be marketed to, and purchased by, the public. It is also imperative to evaluate the extent to which genetic tests are or should be included in Canada's public health care system, and the impact of allowing a two-tiered system for genetic testing. A series of threshold tests are presented as ways of clarifying whether a genetic test is morally appropriate, effective and safe, efficient and appropriate for public funding and whether private purchase poses special problems and requires further regulation. These thresholds also identify the research questions around which professional, public and policy debate must be sustained: What is a morally acceptable goal for genetic services? What are the appropriate benefits? What are the risks? When is it acceptable that services are not funded under health care? And how can the harms of private access be managed?”; see also Holtzman N. A. , “The U.K.'s Policy on Genetic Testing Services Supplied Direct to the Public – Two Spheres and Two Tiers,” Community Genetics 1, no. 1 (1998): At 48–52, at 49; and Caulfield T. A. Williams-Jones B. , eds., The Commercialization of Genetic Research: Ethical, Legal and Policy Issues (New York: Kluwer Academic/Plenum Publishers, 1999): At 181.

The Honorable Rae Robert K. , “The Courts and Group Rights in Canada,” Saint Louis University Law Journal 42 (1997): 539–544. See Law , supra note 18.

The provinces that have created a statutory tort of invasion of privacy are the following: British Columbia (Privacy Act, R.S.B.C. 1979, c. 336); Manitoba (The Privacy Act, R.S.M. 1987, c. P125); Newfoundland (Privacy Act, R.S.N.L. 1990, c. P-22); Saskatchewan (The Privacy Act, R.S.S. 1978, c. P-24). The Courts have left the door open for a general American-style privacy tort and have not rejected it as in England. For a broader discussion, see Craig J. D. R. , “Invasion of Privacy and Charter Values: The Common-Law Tort Awakens,” McGill Law Journal 42, no. 2 (1997): 355–496.

Bennett Moses L. K. , “A Family Affair: Sharing Information about Genetic Diseases,” 2003, Berkeley Electronic Press Legal Repository Web site, available at <http://law.bepress.com/cgi/viewcontent.cgi?article=1124&context=expresso> (last visited February 21, 2007).

And therefore will not be repeated therein. See e.g., Doe v. High-Tech Institute, Inc., 972 P.2d 1060, 1064 (Colo. Ct. App. 1998) at 1071 holding that “[a]n unauthorized HIV test, under the circumstances as set forth in plaintiff's complaint, would be considered by a reasonable person as highly invasive, and therefore, such is sufficient to constitute an unreasonable or offensive intrusion….” The court also held that “there is a generally recognized privacy interest in a person's body. Because personal information concerning a person's health may be obtained through one's blood, urine and other bodily products, such products cannot be extracted from a person or initially tested without either consent or proper authorization.” Id., at 1068.

Very roughly, PIPEDA (Personal Information Protection and Electronic Documents Act, R.S.C. 2000, c. 5), regulates the collection, use and disclosure of personal information by commercial organizations that are federally regulated. It also provides individuals with a right of access to information held about them who may wish to clarify that this is only in the employer-employee context; the legislation applies to all businesses with respect to their customer's personal information.

An act respecting the protection of personal information in the private sector R.S.Q., Chapter 39.1.

Oscapella E. , “Genetics, Privacy and Discrimination,” Canadian Biotechnology Advisory Board Publication (2000), available at <http://cbac-cccb.ca/epic/site/cbac-cccb.nsf/en/ah00347e.html> (last visited March 13, 2007).

See Malinowski M. J. Rao R. , “Legal Limitations on Genetic Research and the Commercialization of Its Results,” American Journal of Comparative Law 54 (2006): At 45–67, 51. Aside from the ban on federally-funded HESCR, there are no federal laws (human embryonic stem cells).

Most notably by the National Bioethics Advisory Commission and the National Academy of Sciences.

While the Equal Protection Clause is a Fourteenth Amendment restriction on the states rather than the federal government, the Due Process Clause of the Fifth Amendment has been read to house an equal protection principle applicable to the federal government identical to that of targeting the states.

Norman-Bloodsaw v. Lawrence Berkeley Laboratory, 135 F.3d 1260 (9th Cir. 1998) at 1269–1270.

See Lin E. , “Prioritizing Privacy: A Constitutional Response to the Internet,” Berkeley Technology Law Journal 17 (2002): At 1085–1154, at 1150: “[T]he federal constitution is firmly entrenched in the concept that constitutional rights apply only against state actors.” Only California's state constitution protects employees from rights infringements in private workplaces. See Cal. Const. Art. I, § 1; Porten v. University of San Francisco, 64 Cal. App. 3d 825, 829 (Cal. Ct. App. 1976).

See Raday , supra note 34. See also Macdonald F. , “Postscript and Prelude: The Jurisprudence of the Charter: Eight Theses,” Supreme Court Law Review 4 (1982): 321–350, at 347.

“Executive Order 13145 – To Prohibit Discrimination in Federal Employment Based on Genetic Information,” Federal Register 6875, United States Equal Employment Opportunity Commission Web site, available at <http://www.eeoc.gov/abouteeoc/35th/thelaw/13145.html> (last visited February 22, 2007).

See Simitis , supra note 1.

The latter group is precluded using genetic information to do the following: “[D]ischarge, fail or refuse to hire, or otherwise discriminate against any employee with respect to the compensation, terms, conditions, or privileges or employment of that employee, because of protected genetic information with respect to the employee, or because of information about a request for or the receipt of genetic services by such employee.”70. For a more detailed analysis of the legal regime in place (in the context of health care, specifically), see Lillquist E. Sullivan C. A. , “The Law and Genetics of Racial Profiling in Medicine,” Harvard Civil Rights and Civil Liberties Law Review 39, no. 2 (2004): 391–483.

Civil Rights Act, 42 U.S.C. §§ 2000e to 2000e-17 (2000).

See Feldman J. A. Katz R. J. , “Genetic Testing and Discrimination in Employment: Recommending a Uniform Statutory Approach,” Hofstra Labor and Employment Law Journal 19, no. 2 (2002): At 389–429, at 392. Outside the employment context, of course, Title II would enjoy default application, prohibiting discrimination or segregation in a place of public accommodation.

With 15 employees or more.

The ADA defines “disability” as the following: “a physical or mental impairment that substantially limits one or more of the major life activities of such individual; a record of such an impairment; or being regarded as having such an impairment.” In March 1995, the EEOC interpreted the definition of “disability” as applying to individuals who have been subjected to discrimination based on genetic information related to illness, disease, or other disorders. In such cases, entities that discriminate against such individuals are regarding the individual as having an impairment that substantially limits a major life activity. For an in-depth critique of the ADA's shortcomings as they relate to genetic information, as well as other U.S. statutory schemes, see Kling N. Pillay S. Lasprograta G. A. , “Workplace Privacy and Discrimination Issues Relating to Genetic Data: A Comparative Law Study of the European Union and the United States,” American Business Law Journal 43, no. 1 (2006): 79–171, at 132.

Kling N. Pillay S. Lasprograta G. A. , “Workplace Privacy and Discrimination Issues Relating to Genetic Data: A Comparative Law Study of the European Union and the United States,” American Business Law Journal 43, no. 1 (2006): 79–171, at 135: “One significant drawback of HIPAA in terms of protecting the privacy of applicants' and employees' genetic information is that it does not apply to employers acting as employers, even if the employers are also sponsors of self-insured health insurance plans that cover employees.”76. Standardsfor Privacy of Individually Identifiable Health Information, 67 Fed. Reg. 65,82,462 (2000) (codified as amended at 45 C.F.R. Parts 160, 164).

See e.g., CA Gov't Code § 12940(o), California State Personnel Board Web site, available at <http://www.spb.ca.gov/civil-rights/documents/CALIFORNIA_CODES8.pdf> (last visited February 22, 2007); Conn. Gen. Stat. Ann. § 46a-60(11)(A) (West 2004); Del. Code Ann. tit. 19, § 711(e) (Supp. 2004); Exec N.Y. , Law § 296.19(a)(1) (McKinney 2004).

National Conference of State Legislatures, Genetics and Health Insurance State Anti-Discrimination Laws , National Conference of State Legislatures Web site, available at <http://www.ncsl.org/programs/health/genetics/ndishlth.htm> (last visited February 22, 2007) regarding state genetics and health insurance laws. See also National Conference of State Legislatures, State Genetics Employment Laws , National Conference of State Legislatures Web site, available at <http://www.ncsl.org/programs/health/genetics/ndiscrim.htm> (last visited February 22, 2007) regarding state genetics and employment laws.

Irwin Cotler refers to human rights as the “secular religion of our times” in “Human Rights and the New Anti-Jewishness,” Justice 38 (2004): At 24–30, at 27.

The root of genetic discrimination is what George Annas has dubbed “genism,” which he defines as “the theory that distinctive human characteristics and abilities are determined by genes.”81. With respect to women particularly, see Miller F. , eds., The Gender of Genetic Futures: The Canadian Biotechnology Strategy, Women and Health. Proceedings of a National Strategic Workshop Held at York University, February 11–12, 2000 (Toronto: York University, 2000), National Network on Environments and Women's Health Web site, available at <http://www.yorku.ca/nnewh/english/pubs/genderofgeneticfuturesfull.pdf> (last visited February 22, 2007).

As was the case of the above-cited Montreal psychiatrist. As Barondess warns, “[w]e face the possibility of a new eugenics that is immensely more powerful because it is based on valid science.” See Barondess , supra note 8.

See Hudson , supra note 38.

For a more detailed reflection on the trust accorded scientists from a sociology perspective, see Leisinger K. M. , “Science and Public Trust,” lecture presented to the Engelberg Forum, October 2002, Novartis Foundation for Sustainable Development Web site, available at <http://www.novartisfoundation.com/pdf/leisinger_science_public.pdf> (last visited February 22, 2007).

See Rogel J.-P. , Genetique et Medias: Histoire d'un Malentendu? (Genetics and the Media: A Case of Misunderstanding?) paper presented to When Science Becomes Culture International Symposium, April 1994, Centre interuniversitaire de recherche sur la science et la technologie Web site, available at <http://www.cirst.uqam.ca/PCST3/PDF/Communications/ROGEL.PDF> (last visited February 22, 2007). See above article for a discussion on the media's tendency to aggrandize and unequivocate scientists' statements relating to their research in genetics.

Duster T. , “Human Molecular Genetics and the Subject of Race: Contrasting the Rhetoric with the Practices in Law and Medicine,” keynote address presented to the West Harlem Environmental Action conference and community dialogue on Human Genetics, Environment, and Communities of Color: Ethical and Social Implications, February 2002. See generally Sage W. M. , “The Lawyerization of Medicine,” Journal of Health Politics, Policy and Law 26, no. 5 (2001): 1179–1195.

According to Dr. Caplan, people tend to believe that their genes are somehow “revealing about their inner blueprint or their inner programming.” See Caplan A. , “Are We Ready for Mass Genetic Testing: Ethical and Social Hurdles?” lecture presented to the Annual Meeting of Women in Biotechnology, October 2002, at 5, New York University School of Medicine: Research Computing Resource Web site, available at <http://mcrcr0.med.nyu.edu/training/caplan.pdf> (last visited February 22, 2007).

Knoppers B. M. , “Overview of Law and Policy Challenges,” Special Issue, Louisiana Law Review 66 (2005): 21–31.

See Gannett , supra note 24. See also Duster, supra note 87.

Hoeffel J. C. , “The Dark Side of DNA Profiling: Unreliable Scientific Evidence Meets the Criminal Defendant,” Stanford Law Review 42, no. 2 (1990): 465–492.

A related issue is the growing enthusiasm for drugs that are tailored for use with specific racial or ethnic groups. This concept is based on the problematic assumption that race can be used as a visible marker for a certain genotype, an assumption that is bound to be false in some cases and could lead to stereotyping with serious health implications. Studies have shown that existing drugs for treatment of cardiac patients were not effective in African Americans. See e.g., Exner D. V. , “Lesser Response to Angiotensin-Converting-Enzyme Inhibitor Therapy in Black as Compared with White Patients with Left Ventricular Dysfunction,” New England Journal of Medicine 344, no. 18 (2001): 1351–1357. For a good review, see Cooper R. S. Kaufman J. S. Ward R. , “Race and Genomics,” New England Journal of Medicine 348, no. 12 (2003): 1166–1170. See Kahn J. , “How a Drug Becomes ‘Ethnic’: Law, Commerce, and the Production of Racial Categories in Medicine,” Yale Journal of Health Policy, Law and Ethics 4, no. 1 (2004): 1–46, for a very interesting discussion of how the FDA subsequently approved a “new” drug exclusively for use in African Americans, essentially allowing the drug company to extend patent protection on an existing drug. If these kinds of drugs continue to be developed, it could lead to a surge in the number of individuals seeking testing, which in turn could further enhance the idea in the general population that cardiovascular disease in African Americans is entirely genetic, when in fact it is just as likely to be the result of poor diet and other social determinants of health factors related to systematic oppression and poverty.

Ofran Y. , “What Can We (and What Can't We) Infer from Biological Information (2005),” University of Haifa Faculty of Law Web site, available at <http://law.haifa.ac.il/events/event_sites/gen/Presentations/yanay.pdf> (last visited February 22, 2007).

See Meyer-Lindenberg , supra note 37: “Our data identify differences in limbic circuitry for emotion regulation and cognitive control that may be involved in the association of MAOA with impulsive aggression, suggest neural systems-level effects of X-inactivation in human brain, and point toward potential targets for a biological approach toward violence.”95. Simitis S. , The Legal Limits of Genetic Research and Results, report presented to the XIIth Congress of the International Academy of Comparative Law, July 2006.

Müller-Hill B. , “Truth, Justice, and Genetics,” Perspectives in Biology and Medicine 43, no. 4 (2000): 577–583.

See Annas , supra note 14; see also Toback E. Proshanky H. M. , eds., Genetic Destiny: Race as a Scientific and Social Controversy (New York: AMS Press, 1976).

Rosenfeld M. , “Can Human Rights Bridge the Gap between Universalism and Cultural Relativism? A Pluralist Assessment Based on the Rights of Minorities,” Columbia Human Rights Law Review 30 (1999): 249–282, at 261.

Harris J. Sulston J. , “Genetic Equity,” Nature Reviews Genetics 5 (2004): 796–800, at 796.

See Bhopal , supra note 20.

While genetic knowledge is, as Professors Harris and Sulston astutely observe, at the zenith of its “prestige,” its scientific accuracy, paradoxically, is not. These leading researchers, particularly Nobel laureate Sir Sulston, urge the development of a moral and legal “compass” to inject equity into the furtherance of genomic knowledge. (See Harris and Sulston, supra note 99).

A professor of speech communication at the University of Georgia who specializes in biomedical issues.

Condit argues: “Usually scientists are very careful in developing their technical vocabulary. But it's hard to describe the geographic dispersion of people properly – and they have these easy [racial] terms in their heads.” Quoting Carolyn Abraham: “Despite the long and ugly social history of race, there is no clear-cut definition for the term. Is a person's race defined by skin colour, that most visible of markers? By language, country of birth, the food they eat or the religion they practice? Not even scientists can agree…[i]f you have a [genetic] sample from Nigeria, can you really say that it represents Africans? Is that the same as African Americans? [In some studies], Jews are white, sometimes they're not. Sometimes they're compared to Caucasians.” Abraham C. , “Race,” The Globe and Mail, June 18, 2005, at F1. See also Condit C. , “Psychosocial, Clinical and Scientific Barriers to Race-Based Genetic Medicine?” 2004, University of Georgia Biomedical and Health Sciences Institute Web site, available at <http://www.biomed.uga.edu/RaceBasedMedicine2.pdf> (last visited February 22, 2007).

Petty E. M. Kardia S. R. , “Genetic Variation, Race and Culture,” Journal of Law, Medicine & Ethics 29, no. 2, Supplement (2001): 39–43.

Simitis S. , Legal Limitations on Genetic Research and the Commercialisation of Its Results, paper presented at the XVIIth International Academy of Comparative Law's Conference in Utrecht, July 17, 2006.

Loi du 6 aout 2004. For an in-depth discussion of the French legal approach to genetic research, see Belliver F. , Les limitations legales de la recherché genetique et de la commercialization de ses resultats: La droit francais, (The Legal Limits of Genetic Research and Commercialization of Its Results: French Law), report prepared for the International Academy of Comparative Law Conference, Utrecht, July 17, 2006 available at <http://www2.law.uu.nl/priv/AIDC/IB.html> (last visited March 13, 2007).