Human rights and genetic discrimination: Protecting genomics' promise for public health

Journal of Law, Medicine and Ethics

Volumn 31, Issue 3, 2003, Pages 377-389

  Silvers, Anita ^a   Stein, Michael Ashley ^b  

^a SAN FRANCISCO STATE UNIVERSITY   (United States)

^b William and Mary   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

GENETICS; GENOMICS; GOVERNMENT; HUMAN; HUMAN RIGHTS; LAW; PRIVACY; PROTECTION; RACE; REVIEW; SEX DIFFERENCE; SOCIAL ASPECT; GENETIC DISORDER; GENETICS AND REPRODUCTION; HEALTH CARE AND PUBLIC HEALTH; HEALTH CARE POLICY; LEGAL APPROACH; LEGAL ASPECT; PUBLIC HEALTH; SOCIAL PSYCHOLOGY;

GENETICS AND REPRODUCTION; HEALTH CARE AND PUBLIC HEALTH; LEGAL APPROACH;

GENETIC DISEASES, INBORN; GENETICS; GENOMICS; HEALTH POLICY; HUMAN RIGHTS; HUMANS; PREJUDICE; PRIVACY; PUBLIC HEALTH;

EID: 0345821632     PISSN: 10731105     EISSN: None     Source Type: Journal    
DOI: 10.1111/j.1748-720X.2003.tb00101.x     Document Type: Review

References (95)

1. Although we focus on employment-related aspects of these potential harms throughout this article, potential harm also exists in other areas such as immigration, workmen's compensation, and especially the provision of health insurance.
2. We refer below to two employment discrimination suits in which workers alleged that their employers excluded them from workplace opportunity based on their disposition to carpal tunnel injury. See E.E.O.C. v. Woodbrigde Corporation, 263 F.3d 812 (8th Cir. 2001); E.E.O.C. v. Burlington Northern Santa Fe Railroad Co., No. C01-4013 (N.D. Iowa filed February 9, 2001) (settlement described at 〈http://www.eeoc.gov/press/4-18-01.html〉).
3. A defense that, according to one health-care advocate, is becoming more frequent. See Assessing HIPAA: How Federal Medical Record Privacy Regulations Can Be Improved: Hearing Before the Subcommittee on Health, House Committee on Energy and Commerce, 107th Cong. (2001) (testimony of Janlori Goldman).
4. See G. Kolata, "Using Gene Tests to Customize Medical Treatment," New York Times, December 20, 1999, at A1.
5. The general inadequacy of federal protection was noted recently by J.L. Hustead and J. Goldman, "Genetics and Privacy," American Journal of Law & Medicine, 28 (2002): 285-307, but these commentators do not offer guidance on how to address this shortcoming.
6. See A.L. Allen, "Genetic Privacy: Emerging Concepts and Values" and M.A. Rothstein, "Genetic Secrets: A Policy Framework," in M.A. Rothstein, ed., Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era (New Haven, CT: Yale University Press, 1998): 31-59 and 451-496.
7. See P.T. Kim, "Genetic Discrimination, Genetic Privacy: Rethinking Employee Protections for a Brave New Workplace," Northwestern University Law Review (forthcoming).
8. Id.; see also G.J. Annas, "Privacy Rules for DNA Databanks: Protecting Coded Future Diaries," JAMA, 270 (1993): 2346-50.
9. Id.; see also G.J. Annas, "Privacy Rules for DNA Databanks: Protecting Coded Future Diaries," JAMA, 270 (1993): 2346-50.
10. See L.B. Andrews, "A Conceptual Framework for Genetic Policy: Comparing the Medical, Public Health, and Fundamental Rights Models," Washington University Law Quarterly, 79 (2001): 221-85, at 277-84 (arguing that protecting genetic privacy is a "fundamental rights issue" that "has implications for one's freedom of association, a constitutionally protected right").
11. M.Z. Madiski, "Genetic Privacy: New Intrusion on New Tort?," Creighton Law Review, 34 (2001): 965-1026.
12. We are grateful to an anonymous referee for bringing this point to our attention.
13. See B.R. Furrow et. al., The Law of Health Care Organization and Finance (4th ed.) (St. Paul, MN: West Group, 2001).
14. 5 U.S.C.§ 552(a) (1999). Another example is the Standards for Privacy of Individually Identifiable Health Information, 65 Fed. Reg. 82, 462, 82,471 (December 28, 2000), which prohibit nonauthorized use of genetic material for research, but do not avoid the problems we set forth below. For a discussion of the regulation's implications for scientific research, see J. Kulynych and D. Korn, "Use and Disclosure of Health Information in Genetic Research: Weighing the Impact of the New Federal Medical Privacy Rule," American Journal of Law & Medicine, 28 (2002): 309-24.
15. 17B B.J. REV. STAT. 30-12 (1996). A catalog of state provisions is set out in the National Conference of State Legislators website, available at 〈http://www.ncsl.org/programs/health/genetics/prt.htm〉. Employment discrimination is not specifically proscribed in these statutes, but is incorporated through a privacy approach. Specifically, employers cannot refuse to hire individuals based on their refusal to submit to genetic tests. In other words, individuals who insist on the privacy of their genetic information cannot be penalized.
16. See A. Silvers, "Primary Care Physicians and the Duty to Inform about Genetic Discrimination," American Journal of Bioethics, 1, no. 3 (2001): 1a.
17. We thank an anonymous reviewer for suggesting that we include this observation.
18. 42 U.S.C.§ 12,001 (1994).
19. See P.S. Miller, "Is There a Pink Slip in my Genes? Genetic Discrimination in the Workplace," Journal of Health Care Law & Policy, 3 (2000): 225-65.
20. 42 U.S.C.§ 12,102 (2)(A)-(C) (2002).
21. A thorough discussion of the "regarded as" prong can be found in M.B. Travis, "Leveling the Playing Field or Stacking the Deck? The 'Unfair Advantage' Critique of Perceived Disability Claims," North Carolina Law Review, 78 (2000): 901-1011.
22. 29 C.F.R.§ 1630.2(1). The reasons an employer might so err are addressed in M.B. Travis, "A Disability or not a Disability? A Causal Attribution Analysis of Perceived Disability Claims," Vanderbilt Law Review, 55 (2002): 481-571.
23. See 136 CONG. REC. H4623 (daily ed. July 12, 1990).
24. See 2 U.S. EEOC Compliance Manual, Order 915.002, at 902-45 (1995); EEOC Policy Guidance on Executive Order 13145: To Prohibit Discrimination in Federal Employment Based on Genetic Information (July 26, 2000), available at 〈http://www.eeoc.gov/docs/guidance-genetic.html〉; EEOC Enforcement Guidance: Disability-Related Inquiries and Medical Examinations of Employees Under the Americans with Disabilities Act (ADA) (July 27, 2000), available at 〈http://www.eeoc.gov/docs/guidance-inquiries.html〉; "EEOC Letter re: Genetic Discrimination," National Disability Law Reporter, 7 (1995), 362.
25. See 2 U.S. EEOC Compliance Manual, Order 915.002, at 902-45 (1995); EEOC Policy Guidance on Executive Order 13145: To Prohibit Discrimination in Federal Employment Based on Genetic Information (July 26, 2000), available at 〈http://www.eeoc.gov/docs/guidance-genetic.html〉; EEOC Enforcement Guidance: Disability-Related Inquiries and Medical Examinations of Employees Under the Americans with Disabilities Act (ADA) (July 27, 2000), available at 〈http://www.eeoc.gov/docs/guidance-inquiries.html〉; "EEOC Letter re: Genetic Discrimination," National Disability Law Reporter, 7 (1995), 362.
26. See 2 U.S. EEOC Compliance Manual, Order 915.002, at 902-45 (1995); EEOC Policy Guidance on Executive Order 13145: To Prohibit Discrimination in Federal Employment Based on Genetic Information (July 26, 2000), available at 〈http://www.eeoc.gov/docs/guidance-genetic.html〉; EEOC Enforcement Guidance: Disability-Related Inquiries and Medical Examinations of Employees Under the Americans with Disabilities Act (ADA) (July 27, 2000), available at 〈http://www.eeoc.gov/docs/guidance-inquiries.html〉; "EEOC Letter re: Genetic Discrimination," National Disability Law Reporter, 7 (1995), 362.
27. See 2 U.S. EEOC Compliance Manual, Order 915.002, at 902-45 (1995); EEOC Policy Guidance on Executive Order 13145: To Prohibit Discrimination in Federal Employment Based on Genetic Information (July 26, 2000), available at 〈http://www.eeoc.gov/docs/guidance-genetic.html〉; EEOC Enforcement Guidance: Disability-Related Inquiries and Medical Examinations of Employees Under the Americans with Disabilities Act (ADA) (July 27, 2000), available at 〈http://www.eeoc.gov/docs/guidance-inquiries.html〉; "EEOC Letter re: Genetic Discrimination," National Disability Law Reporter, 7 (1995), 362.
28. See Miller, supra note 18, at 246.
29. A good example being Sutton v. United Airlines, Inc, 527 U.S. 471 (1999), where the Court refused protection to plaintiffs rejected from employment on the basis of their myopia on the ground that the number of disabled people in the country would far exceed Congress's projections if myopics were included.
30. 42 U.S.C.§ 12111(8).
31. I b i d.
32. We thank an anonymous referee for bringing this point to our attention.
33. 42 U.S.C.A.§ 12201(c); 29 C.F.R.§ 1630.16(f) and Appendix to Part 1630, at§ 1630.16(f) Doe v. Mutual of Omaha Ins. Co., 179 F.3d 557 (7th Cir. 1999); Ford v. Schering-Plough Corp., 145 F.3d 601 (3rd Cir. 1998).
34. This is a difficult task in any context. See generally S. Sturm, "Second Generation Employment Discrimination: A Structural Approach," Columbia Law Review, 101 (2001): 458-568.
35. 42 U.S.C.§ 12113(b). The standard is the same as that of "significant risk" under the Rehabilitation Act. See School Board of Nassau County v. Arline, 480 U.S. 273 (1987).
36. We thank an anonymous referee for alerting us to this point.
37. Chevron U.S.A., Inc. v. Echazabal, 122 S.Ct. 2045, 2047 (2002) (interpreting 29 C.F.R.§ 1630.15(b)(2)).
38. A discussion of the way in which the ADA has been subject to constricted interpretation, especially as it relates to temporary or potential disabilities, is set forth in R.L. Burgdorf, Jr., "'Substantially Limited' Protection From Disability Discrimination: The Special Treatment Model and Misconstructions of the Definition of Disability," Villanova Law Review, 42 (1997): 409-584.
39. As more of the genetic mechanisms that influence the development of disease are discovered, we are likely to find that almost everyone has a higher than species-typical probability of developing one or another disease. This is not to say, of course, that all, or even most, of those with such genetic dispositions actually will develop disease.
40. See EEOC v. Burlington Northern Santa Fe Railroad Co., No. C01-4013 (N.D. Iowa filed Feb. 9, 2001), available at 〈http://www.eeoc.gov/press/4-18-01. html〉.
41. EEOC v. Woodbridge Corporation, 124 F. Supp. 1132 (W.D. Mo. 2000). The ruling was affirmed by the Eighth Circuit Court of Appeals, which reasoned that since the applicants were not limited in a wide range of jobs, the employer could not have perceived them as being disabled. 263 F.3d 812 (8th Cir. 2001).
42. By which we reference, respectively, individuals whose symptoms include substantial limitations of major life activities; individuals who have no symptoms; and people to whom the causative agent of a disease is attributed, but who have not shown symptoms of that condition.
43. See G. Johnson, "Update on Terri Sergeant's Genetic Discrimination Case," available at 〈http://www.alpha1.org/newsmakers/index.htm〉. Sergeant received an EEOC Letter dated November 21, 2001 (Charge No. 14AA00039), permitting her to file a complaint. We thank Ms. Sergeant's attorneys for providing us with this and other information, including a copy of the EEOC letter. What follows is drawn both from the website source and personal conversations.
44. See H.R. 602, 107th Cong. (2001). Most recently, the Subcommittee on Commerce, Trade, and Consumer Protection held a brief hearing on July 11, 2001, at which the measure's co-sponsors and five other supporters, including Dr. Craig Venter of Celera Genomics, advocated its passage. Written and audio transcripts are available at 〈http://energycommerce.house.gov/107/hearings/ 07112001Hearing322/hearing.htm〉.
45. Many state laws addressing genetic discrimination are similar in this respect. A chart of genetic information and health insurance enacted legislation is available at 〈http://www.nhgri.nih.gov/Policy_and_public_affairs/ Legislation/insure.htm〉.
46. See H.R. 602, 107th Cong. (2001).
47. See id. Many state laws addressing genetic discrimination are similar to H.R. 602 in scope.
48. Donepezil hydrochloride (brand name: Aricept), the number one prescribed Alzheimer's medication, is a clinically proven, well-tolerated, once-daily treatment for mild to moderate Alzheimer's disease. An analysis of 671 patients, presented at the 14th annual meeting of the American Association of Geriatric Psychiatry in 2001, indicated that persistent treatment with this drug may enable individuals to function at home for approximately 2 years longer than untreated patients. To obtain the best results, early intervention is indicated. In April of 2001, more than 1.4 million patients in the U.S. were being treated with this drug. See AAGP: Alzheimefs Drug Aricept (Donepezil) May Delay Need For Nursing Home Placements, available from the Doctor's Guide website at 〈http://www.pslgroup.com/dg/1f7166.htm〉.
49. See Sutton v. United Airlines, 527 U.S. 471 (1999) (finding that plaintiffs with severe myopia were not entitled to protection under the ADA because their vision was correctable with the use of glasses); Murphy v. UPS, 527 U.S. 516 (1999) (holding that hypertensive mechanic was not "substantially limited" in a major life function, because he could control his condition with medication); Kirkingburg v. Albertson's, Inc., 527 U.S. 555 (1999) (suggesting that the human body's ability to compensate for disability should be considered as a mitigating measure).
50. A good overview is provided in Miller, supranote 18.
51. 28 U.S.C.§ 2000e (1994).
52. We find unconvincing the faith one commentator has in a recent amendment to Massachusetts' antidiscrimination provision. The statute, which prohibits discrimination "because of" the race, sex, and other various characteristics (not including disability) of an individual, and was amended to include "genetic information," fails to protect individuals for the reasons stated. Accordingly, duplicating this enactment on the federal level will equally fail. See P.A. Roche, "The Genetic Revolution at Work: Legislative Efforts to Protect Employees," American Journal of Law & Medicine, 28 (2002): 271-84.
53. See, e.g., A. Silvers and M.A. Stein, "Disability, Equal Protection, and the Supreme Court: Standing at the Crossroads of Progressive and Retrogressive Logic in Constitutional Classification," University of Michigan Journal of Law Reform, 35 (2001): 81-136.
54. Goesart v. Cleary, 335 U.S. 464 (1948).
55. Cleburne v. Cleburne Living Center, 473 U.S. 432 (1985).
56. See Silvers and Stein, supra note 49.
57. P.J. Giddings, "Lives of the Poets," New York Times Book Review, August 18, 2002, at 7.
58. A type of practice approved by the Supreme Court in Buck v. Bell, 274 U.S. 200 (1927). See generally R.L. Burgdorf and M. Burgdorf, "The Wicked Witch is Almost Dead: Buck v. Bell and the Sterilization of Handicapped Persons," Temple Law Quarterly, 50 (1977): 995-1034.
59. 499 U.S. 187 (1991).
60. Id. at 200-01, 205.
61. Id. at 208-11 (explaining why fear of potential tort liability was an insufficient ground on which to allow the employer's action).
62. 411 U.S. 792 (1973).
63. Id. A general overview is available in J.G. Cook and J.L. Sobieski, Jr., Civil Rights Actions, Vol. 4, 21-320 to 21-322 (New York, NY: Mathew Bender, 2001).
64. What follows draws from parallel arguments we make elsewhere. See Silvers and Stein, supra note 49; see also A. Silvers and M.A. Stein, "From Plessy (1896) and Goesart (1948) to Cleburne (1985) and Garrett (2001): A Chill Wind from the Past Blows Equal Protection Away," forthcoming in Linda Hamilton Krieger, ed., Backlash Against the Americans with Disabilities Act: Interdisciplinary Perspectives (Ann Arbor: University of Michigan Press).
65. See Silvers and Stein, supra note 49.
66. Id. Even in cases where a mutation appears to have 100 percent penetrance, this fact about the mutation is an empirical conclusion. Consequently, it is in principle always subject to disconfirmation.
67. We thank the anonymous reviewer who brought this question to our attention.
68. See Burgdorf, supra note 54.
69. A good overall treatment is J.P. Evans et al., "The Complexities of Predictive Genetic Testing," British Medical Journal, 622 (2001): 1052. On the issues of expression and penetrance see E.B. Claus, et. al., "The Genetic Attributable Risk of Breast and Ovarian Cancer," Cancer, 77 (1996): 2318; S. Thorlacius et. al., "Populations-Based Study of Risk of Breast Cancer in Carriers of BRCA2 Mutation," Lancet, 352 (1998): 1337; D. Ford, et. al., "Risks of Cancer in BRCA1-Mutation Carriers," Lancet, 343 (1994): 692.
70. A good overall treatment is J.P. Evans et al., "The Complexities of Predictive Genetic Testing," British Medical Journal, 622 (2001): 1052. On the issues of expression and penetrance see E.B. Claus, et. al., "The Genetic Attributable Risk of Breast and Ovarian Cancer," Cancer, 77 (1996): 2318; S. Thorlacius et. al., "Populations-Based Study of Risk of Breast Cancer in Carriers of BRCA2 Mutation," Lancet, 352 (1998): 1337; D. Ford, et. al., "Risks of Cancer in BRCA1-Mutation Carriers," Lancet, 343 (1994): 692.
71. A good overall treatment is J.P. Evans et al., "The Complexities of Predictive Genetic Testing," British Medical Journal, 622 (2001): 1052. On the issues of expression and penetrance see E.B. Claus, et. al., "The Genetic Attributable Risk of Breast and Ovarian Cancer," Cancer, 77 (1996): 2318; S. Thorlacius et. al., "Populations-Based Study of Risk of Breast Cancer in Carriers of BRCA2 Mutation," Lancet, 352 (1998): 1337; D. Ford, et. al., "Risks of Cancer in BRCA1-Mutation Carriers," Lancet, 343 (1994): 692.
72. A good overall treatment is J.P. Evans et al., "The Complexities of Predictive Genetic Testing," British Medical Journal, 622 (2001): 1052. On the issues of expression and penetrance see E.B. Claus, et. al., "The Genetic Attributable Risk of Breast and Ovarian Cancer," Cancer, 77 (1996): 2318; S. Thorlacius et. al., "Populations-Based Study of Risk of Breast Cancer in Carriers of BRCA2 Mutation," Lancet, 352 (1998): 1337; D. Ford, et. al., "Risks of Cancer in BRCA1-Mutation Carriers," Lancet, 343 (1994): 692.
73. See L.B. Andrews et al., eds., Assessing Genetic Risks: Implications for Health and Social Policy (Washington, D.C.: National Academy Press, 1994).
74. And, even in cases where a mutation appears to have 100 percent penetrance, this fact about the mutation is an empirical conclusion.
75. See L.F. Ross, "Genetic Exceptionalism vs. Paradigm Shift: Lessons from HIV," Journal of Law, Medicine & Ethics, 29, no. 2 (2001): 141-48.
76. See S. Suter, "The Allure and Peril of Genetics Exceptionalism: Do We Need Special Genetics Legislation?," Washington University Law Quarterly, 79 (2001): 906-1002.
77. G.J. Annas et al., "Drafting the Genetic Privacy Act: Science, Policy, and Practical Considerations," Journal of Law, Medicine & Ethics, 23, no. 4 (1995): 360-66.
78. For an elaboration of these assumptions, which underlie much neoclassical analysis, see R.A. Epstein, Forbidden Grounds: The Case Against Employment Discrimination Laws (Cambridge, MA: Harvard University Press, 1992), at 480-94.
79. C.S. Diver and J.M. Cohen, "Genophobia: What is Wrong with Genetic Discrimination?," University of Pennsylvania Law Review, 149 (2001): 1439-82.
80. Id. For a critique of this model as applied to disabled workers, see M.A. Stein, "Labor Markets, Rationality, and Workers with Disabilities," Berkeley Journal of Employment & Labor Law (2000): 314-34; M.A. Stein, "Market Failure and ADA Title I," in L.P. Francis and A. Silvers, eds., Americans with Disabilities: Exploring Implications of the Law for Individuals and Institutions (New York, NY: Routledge Press, 2000): 193-208. Of course, how these assessments play out depends on what is factored into the notion of social good. See M.A. Stein, "Empirical Implications of Title I," Iowa Law Review, 85 (2000): 1671-90.
81. Id. For a critique of this model as applied to disabled workers, see M.A. Stein, "Labor Markets, Rationality, and Workers with Disabilities," Berkeley Journal of Employment & Labor Law (2000): 314-34; M.A. Stein, "Market Failure and ADA Title I," in L.P. Francis and A. Silvers, eds., Americans with Disabilities: Exploring Implications of the Law for Individuals and Institutions (New York, NY: Routledge Press, 2000): 193-208. Of course, how these assessments play out depends on what is factored into the notion of social good. See M.A. Stein, "Empirical Implications of Title I," Iowa Law Review, 85 (2000): 1671-90.
82. Id. For a critique of this model as applied to disabled workers, see M.A. Stein, "Labor Markets, Rationality, and Workers with Disabilities," Berkeley Journal of Employment & Labor Law (2000): 314-34; M.A. Stein, "Market Failure and ADA Title I," in L.P. Francis and A. Silvers, eds., Americans with Disabilities: Exploring Implications of the Law for Individuals and Institutions (New York, NY: Routledge Press, 2000): 193-208. Of course, how these assessments play out depends on what is factored into the notion of social good. See M.A. Stein, "Empirical Implications of Title I," Iowa Law Review, 85 (2000): 1671-90.
83. Id. For a critique of this model as applied to disabled workers, see M.A. Stein, "Labor Markets, Rationality, and Workers with Disabilities," Berkeley Journal of Employment & Labor Law (2000): 314-34; M.A. Stein, "Market Failure and ADA Title I," in L.P. Francis and A. Silvers, eds., Americans with Disabilities: Exploring Implications of the Law for Individuals and Institutions (New York, NY: Routledge Press, 2000): 193-208. Of course, how these assessments play out depends on what is factored into the notion of social good. See M.A. Stein, "Empirical Implications of Title I," Iowa Law Review, 85 (2000): 1671-90.
84. Diver and Cohen, supra note 72.
85. A good overview is set out in Andrews, supra note 66, at 59-115.
86. Id. at 1642.
87. An early example is D.W. Brock, "The Human Genome Project and Human Identity," Houston Law Review, 29 (1992): 7-22 (analyzing the implications of genomics on societal notions of who is "normal.").
88. S.M. Wolf, "Beyond 'Genetic Discrimination': Toward the Broader Harm of Geneticism," Journal of Law, Medicine & Ethics, 23, no.4 (1995): 345-53.
89. Id. at 347.
90. Id. at 348.
91. I b i d.
92. See id. at 350.
93. Id. at 345-46.
94. Id. at 346.
95. Id.; see also A. Silvers, "Formal Justice" in A. Silvers, D. Wassermann, and M. Mahowald, Disability, Difference, Discrimination: Perspectives on Justice in Bioethics and Public Policy (Lanham, MD: Rowman and Littlefield, 1998): 13-146.