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Policy Before Practice

Genetic Discrimination Reviewed

  • Bioethics
  • Published:
American Journal of Pharmacogenomics

Abstract

The value of genetics in medicine has been steadily developing with our increasing knowledge of the human genome. Genetic testing to determine disease risk or potential drug effects is set to become more commonplace. With this comes increasing concern about access to genetic information, and the potential for discriminatory usage of such information.

At present, the scope and predictability of genetic testing and the conclusions that may be drawn fairly from genetic information are limited. Nonetheless, public concerns about discrimination based on the possession of a genetic trait or condition are well documented. The prospect that such information might be used in decisions regarding employment or insurability has caused anxiety and prompted legislation largely dedicated to the use of information about one’s genotype rather than medical information in general. These laws emphasize genetic information as distinct from other medical information and attempt to prioritize interests in genetic information. As the distinction between genetic and medical information becomes untenable, those who would regulate the use of genotypic information will find this approach to policy problematic.

In considering the limits of legislation as an effective tool of regulating genetic discrimination, several conclusions can be drawn: firstly, despite the promise of genomic medicine, current knowledge is insufficient to justify the use or application of certain genetic information in nonmedical contexts; secondly, public resistance to genomic medicine that is based on fear of genetic discrimination poses a danger that justifies a policy response; and thirdly, such a response may be purely symbolic and not entirely effective, provided that the policy establishes a consensus regarding the applicability of genetic information in nonmedical contexts.

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References

  1. Guttmacher AE, Collins FS. Genomic medicine: a primer. N Engl J Med 2002; 347: 1512–20

    Article  PubMed  CAS  Google Scholar 

  2. Phillips KA, Veenstra DL, Oren E, et al. Potential role of pharmacogenomics in reducing adverse drug reactions: a systematic review. JAMA 2001; 286: 2270–9

    Article  PubMed  CAS  Google Scholar 

  3. Roses AD. Pharmacogenetics and the practice of medicine. Nature 2000; 405: 857–65

    Article  PubMed  CAS  Google Scholar 

  4. Evans WE, Relling MV. Pharmacogenomics: translating functional genomics into rational therapeutics. Science 1999; 286: 487–91

    Article  PubMed  CAS  Google Scholar 

  5. Lukacs GL, Durie PR. Pharmacologic approaches to correcting the basic defect in cystic fibrosis. N Engl J Med 2003 Oct 9; 349(15): 1401–4

    Article  PubMed  CAS  Google Scholar 

  6. Rothstein MA, Epps PG. Pharmacogenomics and the (ir)relevance of race. Pharmacogenomics J 2001; 1: 104–8

    Article  PubMed  CAS  Google Scholar 

  7. Rothstein MA, Epps PG. Ethical and legal implications of pharmacogenomics. Nat Rev Genet 2001; 2: 228–31

    Article  PubMed  CAS  Google Scholar 

  8. Omenn GS. Prospects for pharmacogenetics and ecogenetics in the new millenium. Drug Metab Dispos 2001; 29: 611–4

    PubMed  CAS  Google Scholar 

  9. Williams-Jones B, Corrigan OP. Rhetoric and hype: where’s the ‘ethics’ in pharmacogenomics? Am J Pharmacogenomics 2003; 3(6): 375–83

    Article  PubMed  Google Scholar 

  10. Burke W. Genetic testing. N Engl J Med 2002; 347: 1867–75

    Article  PubMed  CAS  Google Scholar 

  11. Marshall E. Preventing toxicity with a gene test. Science 2003; 302: 588–90

    Article  PubMed  CAS  Google Scholar 

  12. Bornstein RA. Genetic discrimination, insurability and legislation: a closing of the legal loopholes. J Law Policy 1996; 4: 551–610

    PubMed  Google Scholar 

  13. Human Genome Management Information System (HGMIS). Genomics and its impact on medicine and society: a 2001 primer. Bethesda (MD): Department of Energy and the Human Genome Project, 2001

    Google Scholar 

  14. Applebaum-Shapiro SE, Peters J, O’Connell J, et al. Motivations and concerns of patients with access to genetic testing for hereditary pancreatitis. Am J Gastroenterol 2001; 96: 1610–7

    Article  PubMed  CAS  Google Scholar 

  15. Billings PR, Kohn MA, de Cuevas M, et al. Discrimination as a consequence of genetic testing. Am J Hum Genet 1992; 50: 476–82

    PubMed  CAS  Google Scholar 

  16. Geller LN. Individual family and societal dimensions of genetic discrimination: a case study analysis. Sci Eng Ethics 1996; 2: 71–88

    Article  PubMed  Google Scholar 

  17. Lapham EV, Kozma C, Weiss JO. Genetic discrimination: perspectives of consumers. Science 1996; 274: 621–4

    Article  PubMed  CAS  Google Scholar 

  18. Rothenberg K, Terry S. Before it’s too late: addressing fear of genetic information. Science 2002; 297: 196–7

    Article  PubMed  CAS  Google Scholar 

  19. Gottweis H. Gene therapy and the public: a matter of trust. Gene Ther 2002; 9: 667–9

    Article  PubMed  CAS  Google Scholar 

  20. Hall M, Rich S. Genetic privacy laws and patients’ fear of discrimination by health insurers: the view from genetic counselors. J Law Med Ethics 2000; 28: 245–7

    Article  PubMed  CAS  Google Scholar 

  21. Rothstein MA. Genetics and the work force of the next hundred years. Columb Bus Law Rev 2000; (3): 371–402

    Google Scholar 

  22. Condit CM, Parrott RL, O’Grady B. Principles and practices of communication processes for genetics in public health. In: Khoury MJ, Burke W, Thomson E, editors. Genetics and public health in the 21st century: using genetic information to improve health and prevent disease. New York: Oxford University Press, 2000: 549–67

    Google Scholar 

  23. Gostin LO. Genetic discrimination: the use of genetically based diagnostic and prognostic tests by employers and insurers. Am J Law Med 1991; 17(1–2): 109–44

    PubMed  CAS  Google Scholar 

  24. Dolgin JL. Personhood, discrimination, and the new genetics. Brooklyn Law Rev 2001; 66: 755–822

    Google Scholar 

  25. Ross LF. Genetic exceptionalism vs paradigm shift: lessons from HIV. J Law Med Ethics 2001; 29: 141–8

    PubMed  CAS  Google Scholar 

  26. Hellman D. What makes genetic discrimination exceptional? Am J Law Med 2003; 29: 77–116

    PubMed  Google Scholar 

  27. Murray TH. Genetic exceptionalism and ‘future diaries’: is genetic information different from other medical information? In: Rothstein MA, editor. Genetic secrets: protecting privacy and confidentiality in the genetic era. New Haven (CT): Yale University Press, 1997: 60

    Google Scholar 

  28. Miller PS. Genetic discrimination in the workplace. J Law Med Ethics 1998; 26: 189–97

    Article  PubMed  CAS  Google Scholar 

  29. Genetic testing in adoption: the American Society of Human Genetics Social Issues Committee and the American College of Medical Genetics Social, Ethical, and Legal Issues Committee. Am J Hum Genet 2000 Mar; 66(3): 761–7

    Google Scholar 

  30. Stolberg S. Insurance falls prey to genetic bias. LA Times 1994 Mar 27; Sect A1

    Google Scholar 

  31. Burnett JW. A physician’s duty to warn a patient’s relatives of a patient’s genetically inheritable disease. Houst Law Rev 1999; 36: 559–82

    PubMed  CAS  Google Scholar 

  32. Pate v. Threlkel, 661 So.2d, 278 (1995)

  33. Safer v. Estate of Pack, 291 N.J. Super. 619, 677 A.2d, 1188 (1996 Jul 11)

  34. The American Society of Human Genetics Social Issues Subcommittee on Familial Disclosure. American Society of Human Genetics statement: professional disclosure of familial genetic information. Am J Hum Genet 1998; 62: 474–83

    Article  Google Scholar 

  35. Botkin JR. Protecting the privacy of family members in survey and pedigree research. JAMA 2001 Jan 10; 285(2): 207–11

    Article  PubMed  CAS  Google Scholar 

  36. Lee SS-J. Race, distributive justice and the promise of pharmacogenomics: ethical considerations. Am J Pharmacogenomics 2003; 3(6): 385–92

    Article  PubMed  Google Scholar 

  37. Foster MW, Sharp RR, Mulvihill JJ. Pharmacogenetics, race, and ethnicity: social identities and individualized medical care. Ther Drug Monit 2001; 23(3): 232–8

    Article  PubMed  CAS  Google Scholar 

  38. Pseudoxanthoma elasticum [online]. Available from URL: http://www.pxe.org [Accessed 2003 Dec 2]

  39. Orphan Drug Act, 21 USC § 360 cc, 360ee (2000)

  40. Markel H. The stigma of disease: implications of genetic screening. Am J Med 1992; 93: 209–15

    Article  PubMed  CAS  Google Scholar 

  41. Reilly PR. State-supported mass genetic screening programs. In: Milunsky A, Annas GJ, editors. Genetics and the law. Vol. 1. New York: Plenum Press, 1975: 159–84

    Google Scholar 

  42. National Sickle Cell Anemia Control Act, 42 U.S.C. 300(b)(l), et seq. (1972)

  43. Braun L. Race, ethnicity, and health: can genetics explain disparities? Perspect Biol Med 2002; 45: 159–74

    Article  PubMed  Google Scholar 

  44. Sankar P, Cho MK. Toward a new vocabulary of human genetic variation. Science 2002; 298: 1337–8

    Article  PubMed  CAS  Google Scholar 

  45. Lee SS, Mountain J, Koenig BA. The meanings of ‘race’ in the new genomics: implications for health disparities research. Yale J Health Policy Law Ethics 2001; 1: 33–75

    PubMed  CAS  Google Scholar 

  46. Sharp RR, Foster MW. An analysis of research guidelines on the collection and use of human biological materials from American Indian and Alaskan native communities. Jurimetrics 2002; 42: 165–86

    PubMed  Google Scholar 

  47. Dodson M, Williamson R. Indigenous peoples and the morality of the Human Genome Diversity Project. J Med Ethics 1999; 25: 204–8

    Article  PubMed  CAS  Google Scholar 

  48. Burhansstipanov L, Bemis LT, Dignan M. Native American recommendations for genetic research to be culturally respectful. Jurimetrics 2002; 42: 149–57

    PubMed  Google Scholar 

  49. Nelkin D. A brief history of the political work of genetics. Jurimetrics 2002; 42: 121–32

    PubMed  Google Scholar 

  50. Hanson E, Imperatore G, Burke W. HFE gene and hereditary hemochromatosis: a HuGE review. Am J Epidemiol 2001; 154: 193–206

    Article  PubMed  CAS  Google Scholar 

  51. McQueen M. J. Some ethical and design challenges of screening programs and screening tests. Clin Chim Acta 2002; 315: 41–8

    Article  PubMed  CAS  Google Scholar 

  52. Galton DJ, Galton CJ. Francis Galton: and eugenics today. J Med Ethics 1998; 24: 99–105

    Article  PubMed  CAS  Google Scholar 

  53. Johnson-Reed Act. 190, § 1, 43 Stat: 153 (1924) (repelled 1965).

  54. Reilly PR. Eugenics, ethics, sterilization laws. In: Murray TH, Mehlman MJ, editors. Encyclopedia of ethical, legal, and policy issues in biotechnology. Vol. 1. New York: Wiley Technical Encyclopedias, 2000: 204–8

    Google Scholar 

  55. Lombardo PA. Taking eugenics seriously: three generations of ??? are enough? Fl State Univ Law Rev 2003; 30: 191–218

    Google Scholar 

  56. Rothstein MA. Behavioral genetic determinism: its effects on culture and law. In: Carson RA, Rothstein MA, editors. Behavioral genetics: the clash of culture and biology. Baltimore (MD): Johns Hopkins University Press, 1999: 89–96

    Google Scholar 

  57. Sherman SL, DeFries JC, Gottesman II, et al. Behavioral Genetics’ 97: ASHG Statement: recent developments in human behavioral genetics: past accomplishments and future directions. Am J Hum Genet 1997; 60: 1265–74

    Article  PubMed  CAS  Google Scholar 

  58. Fox JL. Eugenics concerns rekindle with application of gene therapy and genetic counseling. Nat Biotechnol 2002; 20: 531–2

    Article  PubMed  CAS  Google Scholar 

  59. Holden C. Race and medicine. Science 2003 Oct 24; 302(5645): 594–6

    Article  PubMed  CAS  Google Scholar 

  60. Subramanian G, Adams MD, Venter JC, et al. Implications of the human genome for understanding human biology and medicine. JAMA 2001; 286: 2296–307

    Article  PubMed  CAS  Google Scholar 

  61. FDA guidance for industry: collection of race and ethnicity data in clinical trials, Jan 30, 2003 [online]. Available from URL: http://www.fda.gov/OHRMS/DOCKETS/98fr/03-2162.pdf [Accessed 2003 Nov 10]

  62. Bursztajn HJ, Sobel R, Albright A. Protecting privacy in the behavioural genetics era. Ment Phys Diability Law Rep 2003; 27: 523–44

    Google Scholar 

  63. Griggs v. Duke Power Co., 401 U.S. 424 (United States Supreme Court 1971)

  64. Title VII of Civil Rights Act, 42 USC §2000e-3(a) (2002), as amended by civil rights Act of 1991, Pub Law No. 102–166, §105(a), 105 Stat. 1071, 1074-5 (codified at 42 USC §2000e-2(k)(1)(A)(i),(B)(ii)).

  65. Norman-Bloodsaw v. Lawrence Berkeley Lab, 135 F.3d 1276 (9th Cir. 1998).

  66. Americans with Disabilities Act of 1990 (S. 933)

  67. Pagnattaro MA. Genetic discrimination and the workplace: employee’s right to privacy vs employer’s need to know. Am Bus LJ 2001; 29: 139–85

    Article  Google Scholar 

  68. Equal Employment Opportunity Commission v. Burlington Northern Santa Fe Railroad (Agreed Order), (N.D. Iowa, Feb. 9, 2001). No. 001-4013 [online]. Available from URL: http://www.eeoc.gov/press/4-18-01.html [Accessed 2003 Nov 20]

  69. Occupational Safety and Health Act of 1970, 29 USC § 651 et seq.

  70. Equal Rights and Equal Dignity for Americans Act of 2003. Stat 16, 108th Cong, §501 et seq.

  71. Health Insurance Portability and Accountability Act. Public Law 104–191, 5701, 110 Stat. 1936 (1996) (codified at 29 USCA §1181 — Supp. 1998)

  72. Galvin R, Milstein A. Sounding board: large employers’ new strategies in health care. N Engl J Med 2002; 347: 939–42

    Article  PubMed  Google Scholar 

  73. Iglehart JK. Changing health insurance trends. N Engl J Med 2002; 347: 956–62

    Article  PubMed  Google Scholar 

  74. Geer KP, Ropka ME, Cohn WF, et al. Factors influencing patients’ decisions to decline cancer genetic counseling services. J Genet Couns 2001; 10: 25–40

    Article  PubMed  CAS  Google Scholar 

  75. Greely HT. Genotype discrimination: the complex case for some legislative protection. Univ PA Law Rev 2001; 149: 1483–505

    Article  PubMed  CAS  Google Scholar 

  76. Nowlan W. A rational view of insurance and genetic discrimination. Science 2002; 297: 195–6

    Article  PubMed  CAS  Google Scholar 

  77. Exec. Order No. 13145, 65 Fed Reg 6877 (2000)

  78. Sutton v. United Air Lines, 527 U.S. 471 (1999)

  79. McEwen JE, Reilly PR. State legislative efforts to regulate use and potential misuse of genetic information. Am J Hum Genet 1992; 51: 637–47

    PubMed  CAS  Google Scholar 

  80. Legislatures, National Conference of State Legislatures (N.C.o.S.). State genetic nondiscrimination laws in life, disability, and long-term care insurance (2002) [online]. Available from URL: http://www.ncsl.org/programs/health/Genetics/ndislife.htm [Accessed 2003 Nov 20]

  81. Legislatures, National Conference of State Legislatures (N.C.o.S.). State discrimination in health insurance laws [online]. Available from URL: http://www.ncsl.org/programs/health/Genetics/ [Accessed 2003 Nov 20]

  82. Hall MA. Legal rules and industry norms: the impact of laws restricting health insurers’ use of genetic information. Jurimetrics 1999; 40: 93–122

    PubMed  CAS  Google Scholar 

  83. Employee Retirement Income Security Act of 1974, 88 Stat. 832, as amended 29 USCA §1001, et seq.

  84. Beckwith J, Alper JS. Reconsidering genetic antidiscrimination legislation. J Law Med Ethics 1998; 26: 205–10

    Article  PubMed  CAS  Google Scholar 

  85. Fink S. EEDC v. BNSF: the risks and rewards of genetic exceptionalism. Washburm Law J 2003; 42: 525–34

    Google Scholar 

  86. Silvers A, Stein MA. An equality pragigm for preventing genetic discrimination. Vanderbilt Law Rev 2002; 55: 1341–95

    PubMed  Google Scholar 

  87. Silvers A, Stein MA. Human rights and genetic discrimination protecting genomics: promise for public health. J Law Ethics 2003; 31: 377–89

    Article  Google Scholar 

  88. Roche PA, Annas GJ. Protecting genetic privacy. Nat Rev Genet 2001; 2: 392–6

    Article  PubMed  CAS  Google Scholar 

  89. Suter SM. The allure and peril of genetics exceptionalism: do we need special genetics legislation? Wash Univ Law Q 2001; 79: 669–748

    PubMed  CAS  Google Scholar 

  90. Rothstein MA, Anderlik MR. What is genetic discrimination, and when and how can it be prevented? Genet Med 2001; 3: 354–8

    Article  PubMed  CAS  Google Scholar 

  91. Epstein RA. The legal regulation of genetic discrimination: old responses to new technology. Boston Univ Law Rev 1994; 74: 1–23

    PubMed  Google Scholar 

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Acknowledgements

The author is grateful to those who assisted in the preparation of this manuscript. Funding in the form of an NIH grant no. 7R01GM062378-02 supported the research for this article.

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  1. University of Houston Health Law & Policy Institute, 100 Law Center, Houston, Texas, 77204-6060, USA

    Phyllis Griffin Epps

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Epps, P.G. Policy Before Practice. Am J Pharmacogenomics 3, 405–418 (2003). https://doi.org/10.2165/00129785-200303060-00008

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