Policy before Practice: Genetic Discrimination Reviewed

American Journal of PharmacoGenomics

Volumn 3, Issue 6, 2003, Pages 405-418

  Epps, Phyllis Griffin ^a  

^a UNIVERSITY OF HOUSTON   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

COMMUNITY; EMPLOYER; FAMILY; GENETIC PROCEDURES; GROUP PSYCHOLOGY; HEALTH CARE POLICY; HEALTH HAZARD; HEALTH INSURANCE; HUMAN; LAW; MEDICAL PRACTICE; MEDICINE; PHARMACOGENOMICS; PHYSICIAN; PRIORITY JOURNAL; RACE; REVIEW; SELF CONCEPT;

GENETICS AND REPRODUCTION;

GENETIC SCREENING; HEALTH POLICY; HUMANS; PREJUDICE;

EID: 0346099495     PISSN: 11752203     EISSN: None     Source Type: Journal    
DOI: 10.2165/00129785-200303060-00008     Document Type: Review

References (91)

1. Guttmacher AE, Collins FS. Genomic medicine: a primer. N Engl J Med 2002; 347: 1512-20
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
3. Roses AD. Pharmacogenetics and the practice of medicine. Nature 2000; 405: 857-65
4. Evans WE, Relling MV. Pharmacogenomics: translating functional genomics into rational therapeutics. Science 1999; 286: 487-91
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
6. Rothstein MA, Epps PG. Pharmacogenomics and the (ir)relevance of race. Pharmacogenomics J 2001; 1: 104-8
7. Rothstein MA, Epps PG. Ethical and legal implications of pharmacogenomics. Nat Rev Genet 2001; 2: 228-31
8. Omenn GS. Prospects for pharmacogenetics and ecogenetics in the new millenium. Drug Metab Dispos 2001; 29: 611-4
9. Williams-Jones B, Corrigan OP. Rhetoric and hype: where's the 'ethics' in pharmacogenomics? Am J Pharmacogenomics 2003; 3 (6): 375-83
10. Burke W. Genetic testing. N Engl J Med 2002; 347: 1867-75
11. Marshall E. Preventing toxicity with a gene test. Science 2003; 302: 588-90
12. Bornstein RA. Genetic discrimination, insurability and legislation: a closing of the legal loopholes. J Law Policy 1996; 4: 551-610
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
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
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
16. Geller LN. Individual family and societal dimensions of genetic discrimination: a case study analysis. Sci Eng Ethics 1996; 2: 71-88
17. Lapham EV, Kozma C, Weiss JO. Genetic discrimination: perspectives of consumers. Science 1996; 274: 621-4
18. Rothenberg K, Terry S. Before it's too late: addressing fear of genetic information. Science 2002; 297: 196-7
19. Gottweis H. Gene therapy and the public: a matter of trust. Gene Ther 2002; 9: 667-9
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
21. Rothstein MA. Genetics and the work force of the next hundred years. Columb Bus Law Rev 2000; (3): 371-402
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
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
24. Dolgin JL. Personhood, discrimination, and the new genetics. Brooklyn Law Rev 2001; 66: 755-822
25. Ross LF. Genetic exceptionalism vs paradigm shift: lessons from HIV. J Law Med Ethics 2001; 29: 141-8
26. Hellman D. What makes genetic discrimination exceptional? Am J Law Med 2003; 29: 77-116
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
28. Miller PS. Genetic discrimination in the workplace. J Law Med Ethics 1998; 26: 189-97
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
30. Stolberg S. Insurance falls prey to genetic bias. LA Times 1994 Mar 27: Sect A1
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
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
35. Botkin JR. Protecting the privacy of family members in survey and pedigree research. JAMA 2001 Jan 10; 285 (2): 207-11
36. Lee SS-J. Race. distributive justice and the promise of pharmacogenomics: ethical considerations. Am J Pharmacogenomics 2003; 3 (6): 385-92
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
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
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
42. National Sickle Cell Anemia Control Act, 42 U.S.C. 300(b)(1), et seq. (1972)
43. Braun L. Race, ethnicity, and health: can genetics explain disparities'? Perspect Biol Med 2002; 45: 159-74
44. Sankar P, Cho MK. Toward a new vocabulary of human genetic variation. Science 2002; 298: 1337-8
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
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
47. Dodson M, Williamson R. Indigenous peoples and the morality of the Human Genome Diversity Project. J Med Ethics 1999; 25: 204-8
48. Burhansstipanov L, Bemis LT, Dignan M. Native American recommendations for genetic research to be culturally respectful. Jurimetrics 2002; 42: 149-57
49. Nelkin D. A brief history of the political work of genetics. Jurimetrics 2002; 42: 121-32
50. Hanson E, Imperatore G, Burke W. HFE gene and hereditary hemochromatosis: a HuGE review. Am J Epidemiol 2001; 154: 193-206
51. McQueen M. J. Some ethical and design challenges of screening programs and screening tests. Clin Chim Acta 2002; 315: 41-8
52. Galton DJ, Galton CJ, Francis Galton: and eugenics today. J Med Ethics 1998; 24: 99-105
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
55. Lombardo PA. Taking eugenics seriously: three generations of are enough? FI State Univ Law Rev 2003; 30: 191-218
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
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
58. Fox JL. Eugenics concerns rekindle with application of gene therapy and genetic counseling. Nat Biotechnol 2002; 20: 531-2
59. Holden C. Race and medicine. Science 2003 Oct 24; 302 (5645): 594-6
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
61. FDA guidance for industry: collection of race and ethnicity data in clinical trials. Jan 30, 2003 [online]. Available from URL: http:www.fda.govOHRMSDOCKETS98fr03-2162.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
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)(I)(A)(i),(B)(ii)).
65. Norman-Bloodsaw v. Lawrence Berkelcy 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
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
73. Iglehart JK. Changing health insurance trends. N Engl J Med 2002; 347: 956-62
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
75. Greely HT. Genotype discrimination: the complex case for some legislative protection. Univ PA Law Rev 2001; 149: 1483-505
76. Nowlan W. A rational view of insurance and genetic discrimination. Science 2002; 297: 195-6
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
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 201
82. Hall MA. Legal rules and industry norms: the impact of laws restricting health insurers' use of genetic information. Jurimetrics 1999; 40: 93-122
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
85. Fink S. EEDC v. BNSF: the risks and rewards of genetic exceptionalism. Washburm Law J 2003; 42: 525-34
86. Silvers A, Stein MA. An equality pragigm for preventing genetic discrimination. Vanderbilt Law Rev 2002; 55: 1341-95
87. Silvers A, Stein MA. Human rights and genetic discrimination protecting genomics: promise for public health. J Law Ethics 2003; 31: 377-89
88. Roche PA, Annas GJ. Protecting genetic privacy. Nat Rev Genet 2001; 2: 392-6
89. Suter SM. The allure and peril of genetics exceptionalism: do we need special genetics legislation? Wash Univ Law Q 2001; 79: 669-748
90. Rothstein MA, Anderlik MR. What is genetic discrimination, and when and how can it be prevented? Genet Med 2001; 3: 354-8
91. Epstein RA. The legal regulation of genetic discrimination: old responses to new technology. Boston Univ Law Rev 1994; 74: 1-23