Genetic Privacy and Confidentiality: Why They Are so Hard to Protect

Journal of Law, Medicine and Ethics

Volumn 26, Issue 3, 1998, Pages 198-204

  Rothstein, Mark A ^a  

^a NONE

Author keywords

[No Author keywords available]

Indexed keywords

AMERICANS WITH DISABILITIES ACT 1990; CIVIL RIGHTS; CONFIDENTIALITY; EMPLOYMENT; EQUAL EMPLOYMENT OPPORTUNITY COMMISSION; GENETIC DISORDER; GENETIC PRIVACY; GENETIC SCREENING; GENETICS AND REPRODUCTION; GOVERNMENT; GOVERNMENT REGULATION; HUMAN; INSURANCE; INTERPERSONAL COMMUNICATION; LEGAL APPROACH; LEGAL ASPECT; PRIVACY; PROFESSIONAL PATIENT RELATIONSHIP; REVIEW; UNITED STATES;

AMERICANS WITH DISABILITIES ACT 1990; EQUAL EMPLOYMENT OPPORTUNITY COMMISSION; GENETICS AND REPRODUCTION; LEGAL APPROACH; PROFESSIONAL PATIENT RELATIONSHIP;

CIVIL RIGHTS; CONFIDENTIALITY; DISCLOSURE; EMPLOYMENT; FEDERAL GOVERNMENT; GENETIC DISEASES, INBORN; GENETIC PRIVACY; GENETIC SCREENING; GOVERNMENT REGULATION; HUMANS; INSURANCE SELECTION BIAS; PRIVACY; UNITED STATES;

EID: 0032148838     PISSN: 10731105     EISSN: None     Source Type: Journal    
DOI: 10.1111/j.1748-720X.1998.tb01420.x     Document Type: Article

References (30)

1. For further discussion, see 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: Yale University Press, 1997): 451-95.
2. See A.L. Allen, "Genetic Privacy: Emerging Concepts and Values," in Rothstein, id. at 31-59.
3. See id.
4. See, for example, G.J. Annas, L.H. Glantz, and P.A. Roche, The Genetic Privacy Act and Commentary (Boston: Boston University School of Public Health, 1995).
5. For a listing of the state laws, see B.A. Trolin, ed., Mapping Public Policy for Genetic Technologies: A Legislator's Guide (Denver: National Conference of State Legislatures, 1998).
6. See P. Kahn, "Coming to Grips with Genes and Risk," Science, 274 (1996): 496.
7. See, for example, W.J. Thomas, "The Clinton Health Care Reform Plan: A Failed Dramatic Presentation," Stanford Law & Policy Review, 7 (1995-96): at 83; and see generally Symposium, "The Failure of Health Care Reform," Journal of Health Politics, Policy & Law, 20 (1995): 271-489.
8. See, for example, W.J. Thomas, "The Clinton Health Care Reform Plan: A Failed Dramatic Presentation," Stanford Law & Policy Review, 7 (1995-96): at 83; and see generally Symposium, "The Failure of Health Care Reform," Journal of Health Politics, Policy & Law, 20 (1995): 271-489.
9. See R.B. Meyer, "Justification for Permitting Life Insurers to Continue to Underwrite on the Basis of Genetic Information and Genetic Test Results," Suffolk University Law Review, 27 (1993): 1271-305.
10. See R.J. Pokorski, "Insurance Underwriting in the Genetic Era," American Journal of Human Genetics, 60 (1997): 205-16.
11. See Ariz. Rev. Stat. Ann. § 20-448.02 (West 1998); Cal. Ins. Code § 10148 (West 1998); Minn. Stat. § 72A.139 (1998); N.J. Stat. Ann. § 10:5-45 (West 1998); N.M. Stat. Ann. §§ 24-21-3 to -4 (Michie 1998); N.Y. Ins. Law § 2612 (McKinney 1998); and Or. Rev. Stat. § 746.135 (1998).
12. See Ariz. Rev. Stat. Ann. § 20-448 (West 1998); Cal. Ins. Code § 10148; Me. Rev. Stat. Ann. tit. 24-A, § 2159-c (West 1998); Md. Code Ann., Ins. § 27-208(a)(2)(i) (1998); Mont. Code Ann. § 33-18-206(4) (1998); N.J. Stat. Ann. § 17B:30-12(f) (West 1998); N.M. Stat. Ann. §§ 24-21-3 to -4; and Wis. Stat. Ann. § 631.89(3)(b)(2) (West 1998).
13. See N.H. H.B. 241 (1997) (noting prohibition for policies below $500,000).
14. See Conn. H.B. 5053 (1997); and Haw. S. 112 (1998).
15. See Colo. Rev. Stat. Ann. § 10-3-1104.7(3)(b) (West 1998).
16. See D.W. Light, "The Practice and Ethics of Risk-Rated Health Insurance," JAMA, 267 (1992): at 2504.
17. Americans with Disabilities Act, 42 U.S.C. §§ 12101-12213 (1994).
18. Civil Rights Act of 1964, 42 U.S.C. § 2000e (1994).
19. Age Discrimination in Employment Act, 29 U.S.C. §§ 621-634 (1994).
20. See 2 EEOC Compliance Manual (CCH), §§ 902-45 (Mar. 14, 1995), reprinted in Daily Labor Report (Mar. 16, 1995), E-1, E-23 (citing definition of disability).
21. See 2 EEOC Compliance Manual (CCH), §§ 902-45 (Mar. 14, 1995), reprinted in Daily Labor Report (Mar. 16, 1995), E-1, E-23 (citing definition of disability).
22. See M.A. Rothstein, "Genetic Discrimination in Employment and the Americans with Disabilities Act," Houston Law Review, 29 (1992): 23-84.
23. In Bragdon v. Abbott, 118 S. Ct. 2196 (1998), the U.S. Supreme Court, ruling 5-4, held that a dental patient with asymptomatic human immunodeficiency virus (HIV) was covered under the public accommodation (Title III) provision of the Americans with Disabilities Act (ADA). Of potential relevance to genetic discrimination cases, the Court held that, at least as to this plaintiff, HIV infection was a substantial limitation of the major life activity of procreation. A similar argument is likely to be raised by an individual with a genetic predisposition to illness. For further discussion of Bragdon v. Abbott, see W.E. Parmet, "The Supreme Court Confronts HIV: Reflections on Bragdon v. Abbott," Journal of Law, Medicine & Ethics, 26 (1998): 225-40.
24. See Ariz. Rev. Stat. 41-1463(B)(3) (West 1992 & Supp. 1997) (enacted 1997); Act of July 3, 1998, ch. 99, 1998 Cal. Legis. Serv. 468 (West) (enacted 1998); 1998 Conn. Legis. Serv. 98-180 (West) (enacted 1998); Del. Code Ann. tit. 18, § 2317 (1998) (enacted 1998); Iowa Code Ann. § 729.6 (1993) (enacted 1992); N.H. Rev. Stat. Ann. § 141-H:3.I(b) (1997) (enacted 1995); 1998 N.M. Adv. Legis. Serv. ch. 77 (enacted 1998); N.Y. Exec. Law § 296(1)(a) (Consol. 1998) (enacted 1996); N.C. Gen. Stat. § 95-28.1A (1997) (enacted (1997); Okla. Stat. tit. 36, § 3614.1 (1998) (enacted 1998); R.I. Gen. Laws § 28-6.7-1 (1995) (enacted 1992); Tex. Lab. Code Ann. §§ 21.410-.402 (West Supp. 1998) (enacted 1997); Vt. Stat. Ann. tit. 18, § 9333(a) (1998) (enacted 1998); and Wis. Stat. Ann. § 111.372 (West 1997) (enacted 1992).
25. See Tex. Lab. Code Ann. §§ 21.410-.402.
26. See Minn. Stat. § 363.02, subdiv. 1, (9)(I) (West 1991).
27. See Minn. Stat. § 363.03, subdiv. 1a (West 1998). The ADA has no comparable provision. See generally M.A. Rothstein, "Legal and Ethical Aspects of Medical Screening," Occupational Medicine: State of the Art Reviews, 3, no. 1 (1996): 31.
28. See Minn. Stat. § 363.03, subdiv. 1, (4)(c) (West Supp. 1998). Under the ADA, only qualified individuals with disabilities have standing to challenge unlawful preemployment inquiries. See Armstrong v. Turner Industries, Ltd., 141 F.3d 554 (5th Cir. 1998); and Griffin v. Steeltek, Inc., 964 F. Supp. 317 (N.D. Okla. 1997).
29. See M.A. Rothstein, B.D. Gelb, and S.G. Craig, "Protecting Genetic Privacy by Permitting Employer Access Only to Job-Related Employee Medical Information: Analysis of a Unique Minnesota Law," American Journal of Law & Medicine, XXIV (1998): 399-417.
30. See, for example, Genetic Employment Protection Act of 1997, H.R. 2275, 105th Cong. (1997) (Rep. Nita Lowey (D. N.Y.)); Genetic Nondiscrimination in the Workplace Act, H.R. 2215, 105th Cong. (1997) (Rep. Joseph Kennedy (D. Mass.)); Genetic Privacy and Nondiscrimination Act of 1997, H.R. 2198, 105th Cong. (1997) (Rep. Cliff Stearns (R. Fla.)); Genetic Justice Act, S. 1045, 105th Cong. (1997) (Sen. Tom Daschle (D. S.D.)); and Genetic Confidentiality and Nondiscrimination Act of 1997, S. 422, 105th Cong. (1997) (Sen. Pete Domenici (R. N.M.)).