Reconsidering Genetic Antidiscrimination Legislation

Journal of Law, Medicine and Ethics

Volumn 26, Issue 3, 1998, Pages 205-210

  Beckwith, Jon ^a   Alper, Joseph S ^a  

^a NONE

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; BEHAVIOR GENETICS; CIVIL RIGHTS; EMPIRICAL RESEARCH; GENETIC DISORDER; GENETIC PRIVACY; GENETIC SCREENING; GENETICS AND REPRODUCTION; HEREDITY; HUMAN; LEGAL APPROACH; LEGAL ASPECT; SOCIAL PSYCHOLOGY; UNITED STATES;

GENETICS AND REPRODUCTION; LEGAL APPROACH;

CIVIL RIGHTS; EMPIRICAL RESEARCH; GENETIC DETERMINISM; GENETIC DISEASES, INBORN; GENETIC PRIVACY; GENETIC SCREENING; GENETICS, BEHAVIORAL; HUMANS; PREJUDICE; UNITED STATES;

EID: 0346553287     PISSN: 10731105     EISSN: None     Source Type: Journal    
DOI: 10.1111/j.1748-720X.1998.tb01421.x     Document Type: Article

References (40)

1. See B. Kerem et al., "Identification of the Cystic Fibrosis Gene: Genetic Analysis," Science, 245 (1989): 1073-80; and J.M. Rommens et al., "Identification of the Cystic Fibrosis Gene: Chromosome Walking and Jumping," Science, 245 (1989): 1059- 65.
2. See B. Kerem et al., "Identification of the Cystic Fibrosis Gene: Genetic Analysis," Science, 245 (1989): 1073-80; and J.M. Rommens et al., "Identification of the Cystic Fibrosis Gene: Chromosome Walking and Jumping," Science, 245 (1989): 1059-65.
3. See G.J. Meissen et al., "Predictive Testing for Huntington's Disease with Use of a Linked DNA Marker," N. Engl. J. Med., 318 (1988): 535-42.
4. See generally N.A. Holtzman, Proceed with Caution: Predicting Genetic Risks in the Recombinant DNA Era (Baltimore: Johns Hopkins University Press, 1989).
5. See L. Gostin, "Genetic Discrimination: The Use of Genetically Based Diagnostic and Prognostic Tests by Employers and Insurers," American Journal of Law & Medicine, XVII (1991): 109-44.
6. See M.S. Yesley, "Genetic Privacy, Discrimination, and Social Policy: Challenges and Dilemmas," Microbial & Comparative Genomics, 2 (1997): 19-35.
7. See P.R. Billings et al., "Discrimination as a Consequence of Genetic Testing," American Journal of Human Genetics, 50 (1992): 476-82.
8. See L.N. Geller et al., "Individual, Family and Societal Dimensions of Genetic Discrimination: A Case Study Analysis," Science and Engineering Ethics, 2 (1996): 71-88.
9. See E.V. Lapham, C. Kozma, and J.O. Weiss, "Genetic Discrimination: Perspective of Consumers," Science, 274 (1996): 621-24.
10. See S. Stolberg, "Genetic Bias: Held Hostage by Heredity," Los Angeles Times, Mar. 27, 1994, at A1, A20; R. Saltus, "Fear of Insurers Leading to Gene Testing in Secret," Boston Globe, Sept. 12, 1994, at 1, 10; P.J. Hilts, "Panel Reports Genetic Screening Has Cost Some Their Health Plans," New York Times, Nov. 5, 1993, at A1; and M. Cherskov, "Fighting Genetic Discrimination," ABA Journal, June (1992): 38.
11. See S. Stolberg, "Genetic Bias: Held Hostage by Heredity," Los Angeles Times, Mar. 27, 1994, at A1, A20; R. Saltus, "Fear of Insurers Leading to Gene Testing in Secret," Boston Globe, Sept. 12, 1994, at 1, 10; P.J. Hilts, "Panel Reports Genetic Screening Has Cost Some Their Health Plans," New York Times, Nov. 5, 1993, at A1; and M. Cherskov, "Fighting Genetic Discrimination," ABA Journal, June (1992): 38.
12. See S. Stolberg, "Genetic Bias: Held Hostage by Heredity," Los Angeles Times, Mar. 27, 1994, at A1, A20; R. Saltus, "Fear of Insurers Leading to Gene Testing in Secret," Boston Globe, Sept. 12, 1994, at 1, 10; P.J. Hilts, "Panel Reports Genetic Screening Has Cost Some Their Health Plans," New York Times, Nov. 5, 1993, at A1; and M. Cherskov, "Fighting Genetic Discrimination," ABA Journal, June (1992): 38.
13. See S. Stolberg, "Genetic Bias: Held Hostage by Heredity," Los Angeles Times, Mar. 27, 1994, at A1, A20; R. Saltus, "Fear of Insurers Leading to Gene Testing in Secret," Boston Globe, Sept. 12, 1994, at 1, 10; P.J. Hilts, "Panel Reports Genetic Screening Has Cost Some Their Health Plans," New York Times, Nov. 5, 1993, at A1; and M. Cherskov, "Fighting Genetic Discrimination," ABA Journal, June (1992): 38.
14. See Geller et al., supra note 7.
15. See R.J. Pokorski, "Insurance Underwriting in the Genetic Era," American Journal of Human Genetics, 60 (1997): 205-16.
16. See Billings et al., supra note 6; and Geller et al., supra note 7.
17. See Geller et al., supra note 7.
18. See Pokorski, supra note 11.
19. See G. Kolata, "Advent of Testing for Breast Cancer Leads to Fears of Disclosure and Discrimination," New York Times, Feb. 4, 1997, at C1, C3.
20. See G. Kolata, "Genetic Testing Falls Short of Public Embrace," New York Times, Mar. 27, 1998, at A16; and L.W. Winik, "When You Should Consider a Genetic Test," Parade Magazine, Apr. 19, 1998, at 8-9.
21. See G. Kolata, "Genetic Testing Falls Short of Public Embrace," New York Times, Mar. 27, 1998, at A16; and L.W. Winik, "When You Should Consider a Genetic Test," Parade Magazine, Apr. 19, 1998, at 8-9.
22. See K.L. Hudson et al., "Genetic Discrimination and Health Insurance: An Urgent Need for Reform," Science, 270 (1995): 391-93; D. Karjala, "A Legal Research Agenda for the Human Genome Initiative," Jurimetrics, 32 (1992): 121-311; and G.J. Annas, "Privacy Rules for DNA Databanks. Protecting Coded 'Future Diaries'," JAMA, 270 (1993): 2346-50.
23. See K.L. Hudson et al., "Genetic Discrimination and Health Insurance: An Urgent Need for Reform," Science, 270 (1995): 391-93; D. Karjala, "A Legal Research Agenda for the Human Genome Initiative," Jurimetrics, 32 (1992): 121-311; and G.J. Annas, "Privacy Rules for DNA Databanks. Protecting Coded 'Future Diaries'," JAMA, 270 (1993): 2346-50.
24. See K.L. Hudson et al., "Genetic Discrimination and Health Insurance: An Urgent Need for Reform," Science, 270 (1995): 391-93; D. Karjala, "A Legal Research Agenda for the Human Genome Initiative," Jurimetrics, 32 (1992): 121-311; and G.J. Annas, "Privacy Rules for DNA Databanks. Protecting Coded 'Future Diaries'," JAMA, 270 (1993): 2346-50.
25. See Pokorski, supra note 11; D.A. Stone, "The Implications of the Human Genome Project for Access to Health Insurance," in T.H. Murray, M.A. Rothstein, and R.F. Murray, eds., The Human Genome Project and the Future of Health Care (Bloomington: Indiana University Press, 1996): 133-57; T.H. Murray, "Genetic Exceptionalism and 'Future Diaries': Is Genetic Information Different from Other Medical Information?," in M.A. Rothstein, ed., Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era (New Haven: Yale University Press, 1997): 60-73; J.S. Alper and J. Beckwith, "Distinguishing Genetic from Nongenetic Medical Tests: Some Implications for Antidiscrimination Legislation," Science and Engineering Ethics, 4 (1998): 151-54; and M.S. Yesley, "Protecting Genetic Difference," Berkeley Technology Law Journal, 13 (1998): 653-65.
26. See Pokorski, supra note 11; D.A. Stone, "The Implications of the Human Genome Project for Access to Health Insurance," in T.H. Murray, M.A. Rothstein, and R.F. Murray, eds., The Human Genome Project and the Future of Health Care (Bloomington: Indiana University Press, 1996): 133-57; T.H. Murray, "Genetic Exceptionalism and 'Future Diaries': Is Genetic Information Different from Other Medical Information?," in M.A. Rothstein, ed., Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era (New Haven: Yale University Press, 1997): 60-73; J.S. Alper and J. Beckwith, "Distinguishing Genetic from Nongenetic Medical Tests: Some Implications for Antidiscrimination Legislation," Science and Engineering Ethics, 4 (1998): 151-54; and M.S. Yesley, "Protecting Genetic Difference," Berkeley Technology Law Journal, 13 (1998): 653-65.
27. See Pokorski, supra note 11; D.A. Stone, "The Implications of the Human Genome Project for Access to Health Insurance," in T.H. Murray, M.A. Rothstein, and R.F. Murray, eds., The Human Genome Project and the Future of Health Care (Bloomington: Indiana University Press, 1996): 133-57; T.H. Murray, "Genetic Exceptionalism and 'Future Diaries': Is Genetic Information Different from Other Medical Information?," in M.A. Rothstein, ed., Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era (New Haven: Yale University Press, 1997): 60-73; J.S. Alper and J. Beckwith, "Distinguishing Genetic from Nongenetic Medical Tests: Some Implications for Antidiscrimination Legislation," Science and Engineering Ethics, 4 (1998): 151-54; and M.S. Yesley, "Protecting Genetic Difference," Berkeley Technology Law Journal, 13 (1998): 653-65.
28. See Pokorski, supra note 11; D.A. Stone, "The Implications of the Human Genome Project for Access to Health Insurance," in T.H. Murray, M.A. Rothstein, and R.F. Murray, eds., The Human Genome Project and the Future of Health Care (Bloomington: Indiana University Press, 1996): 133-57; T.H. Murray, "Genetic Exceptionalism and 'Future Diaries': Is Genetic Information Different from Other Medical Information?," in M.A. Rothstein, ed., Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era (New Haven: Yale University Press, 1997): 60-73; J.S. Alper and J. Beckwith, "Distinguishing Genetic from Nongenetic Medical Tests: Some Implications for Antidiscrimination Legislation," Science and Engineering Ethics, 4 (1998): 151-54; and M.S. Yesley, "Protecting Genetic Difference," Berkeley Technology Law Journal, 13 (1998): 653-65.
29. See J. Preston, "Trenton Votes to Put Strict Limits on Use of Gene Tests by Insurers," New York Times, June 18, 1996, at A1, B6.
30. See S. Lehrman, "Job Discrimination Based on Genetics Set for California Ban," Nature, 393 (1998): 611.
31. See generally D. Nelkin and M.S. Lindee, The DNA Mystique: The Gene as a Cultural Icon (New York: W.H. Freeman, 1995).
32. See Letter from Senator Pete Domenici, To Whom it May Concern, Re: The Genetic Confidentiality and Nondiscrimination Act of 1996 (June 17, 1996) (unpublished) (on file with authors).
33. G. Geller et al., "Genetic Testing for Susceptibility to Adult-Onset Cancer," JAMA, 277 (1997): at 1468.
34. See L. Jaroff, "The Gene Hunt," Time, Mar. 20, 1989, at 67.
35. See D. Meschede et al., "Compound Heterozygosity for the Delta F508 and F508C Cystic Fibrosis Transmembrane Regulator (CFTR) Mutations in a Patient with Congenital Bilateral Aplasia of the Vas Deferens," American Journal of Human Genetics, 53 (1993): 292-93; R. Donat et al., "The Incidence of Cystic Fibrosis Gene Mutations in Patients with Congenital Bilateral Absence of the Vas Deferens in Scotland," British Journal of Urology, 79 (1997): 74-77; M.A. Nance, "Huntington Disease - Another Chapter Rewritten," American Journal of Human Genetics, 59 (1996): 1-6; and D.C. Rubinsztein et al., "Phenotypic Characterization of Individuals with 30-40 CAG Repeats in the Huntington Disease (HD) Gene Reveals HD Cases with 36 Repeats and Apparently Normal Elderly Individuals with 36-39 Repeats," American Journal of Human Genetics, 59 (1996): 16-22.
36. See D. Meschede et al., "Compound Heterozygosity for the Delta F508 and F508C Cystic Fibrosis Transmembrane Regulator (CFTR) Mutations in a Patient with Congenital Bilateral Aplasia of the Vas Deferens," American Journal of Human Genetics, 53 (1993): 292-93; R. Donat et al., "The Incidence of Cystic Fibrosis Gene Mutations in Patients with Congenital Bilateral Absence of the Vas Deferens in Scotland," British Journal of Urology, 79 (1997): 74-77; M.A. Nance, "Huntington Disease - Another Chapter Rewritten," American Journal of Human Genetics, 59 (1996): 1-6; and D.C. Rubinsztein et al., "Phenotypic Characterization of Individuals with 30-40 CAG Repeats in the Huntington Disease (HD) Gene Reveals HD Cases with 36 Repeats and Apparently Normal Elderly Individuals with 36-39 Repeats," American Journal of Human Genetics, 59 (1996): 16-22.
37. See D. Meschede et al., "Compound Heterozygosity for the Delta F508 and F508C Cystic Fibrosis Transmembrane Regulator (CFTR) Mutations in a Patient with Congenital Bilateral Aplasia of the Vas Deferens," American Journal of Human Genetics, 53 (1993): 292-93; R. Donat et al., "The Incidence of Cystic Fibrosis Gene Mutations in Patients with Congenital Bilateral Absence of the Vas Deferens in Scotland," British Journal of Urology, 79 (1997): 74-77; M.A. Nance, "Huntington Disease - Another Chapter Rewritten," American Journal of Human Genetics, 59 (1996): 1-6; and D.C. Rubinsztein et al., "Phenotypic Characterization of Individuals with 30-40 CAG Repeats in the Huntington Disease (HD) Gene Reveals HD Cases with 36 Repeats and Apparently Normal Elderly Individuals with 36-39 Repeats," American Journal of Human Genetics, 59 (1996): 16-22.
38. See D. Meschede et al., "Compound Heterozygosity for the Delta F508 and F508C Cystic Fibrosis Transmembrane Regulator (CFTR) Mutations in a Patient with Congenital Bilateral Aplasia of the Vas Deferens," American Journal of Human Genetics, 53 (1993): 292-93; R. Donat et al., "The Incidence of Cystic Fibrosis Gene Mutations in Patients with Congenital Bilateral Absence of the Vas Deferens in Scotland," British Journal of Urology, 79 (1997): 74-77; M.A. Nance, "Huntington Disease - Another Chapter Rewritten," American Journal of Human Genetics, 59 (1996): 1-6; and D.C. Rubinsztein et al., "Phenotypic Characterization of Individuals with 30-40 CAG Repeats in the Huntington Disease (HD) Gene Reveals HD Cases with 36 Repeats and Apparently Normal Elderly Individuals with 36-39 Repeats," American Journal of Human Genetics, 59 (1996): 16-22.
39. See N. Risch and D. Botstein, "A Manic Depressive History," Nature Genetics, 12 (1996): 351-53.
40. See Lehrman, supra note 20.