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Genetic Privacy and Confidentiality: Why They are So Hard to Protect

Published online by Cambridge University Press:  01 January 2021

Extract

Genetic privacy and confidentiality have both intrinsic and consequential value. Although general agreement exists about the need to protect privacy and confidentiality in the abstract, most of the concern has focused on preventing the harmful uses of this sensitive information. I hope to demonstrate in this article that the reason why genetic privacy and confidentiality are so difficult to protect is that any effort to protect them inevitably implicates broader and extremely contentious issues, such as the right of access to health care. Moreover, the tentative legislative and policy steps undertaken and proposed thus far have been, for the most part, misguided, simplistic, and ineffective.

Type
Article
Copyright
Copyright © American Society of Law, Medicine and Ethics 1998

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References

For further discussion, see Rothstein, M.A., “Genetic Secrets: A Policy Framework,” in Rothstein, M.A., ed., Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era (New Haven: Yale University Press, 1997): 451–95.Google Scholar
See Allen, A.L., “Genetic Privacy: Emerging Concepts and Values,” in Rothstein, , id. at 31–59.Google Scholar
See, for example, Annas, G.J. Glantz, L.H. Roche, P.A., The Genetic Privacy Act and Commentary (Boston: Boston University School of Public Health, 1995).Google Scholar
For a listing of the state laws, see Trolin, B.A., ed., Mapping Public Policy for Genetic Technologies: A Legislator's Guide (Denver: National Conference of State Legislatures, 1998).Google Scholar
See Kahn, P., “Coming to Grips with Genes and Risk,” Science, 274 (1996): 496.CrossRefGoogle Scholar
See, for example, Thomas, W.J., “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): 271–189.Google Scholar
See Meyer, R.B., “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.Google Scholar
See Pokorski, R.J., “Insurance Underwriting in the Genetic Era,” American Journal of Human Genetics, 60 (1997): 205–16.Google Scholar
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).Google Scholar
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).Google Scholar
See N.H. H.B. 241 (1997) (noting prohibition for policies below $500,000).Google Scholar
See Conn. H.B. 5053 (1997); and Haw. S. 112 (1998).Google Scholar
See Colo. Rev. Stat. Ann. § 10-3-1104.7(3)(b) (West 1998).Google Scholar
See Light, D.W., “The Practice and Ethics of Risk-Rated Health Insurance,” JAMA, 267 (1992): At 2504.CrossRefGoogle Scholar
Americans with Disabilities Act, 42 U.S.C. §§ 12101–12213 (1994).Google Scholar
Civil Rights Act of 1964, 42 U.S.C. § 2000e (1994).Google Scholar
Age Discrimination in Employment Act, 29 U.S.C. §§ 621–634 (1994).Google Scholar
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).Google Scholar
See Rothstein, M.A., “Genetic Discrimination in Employment and the Americans with Disabilities Act,” Houston Law Review, 29 (1992): 2384.Google Scholar
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 Parmet, W.E., “The Supreme Court Confronts HIV: Reflections on Bragdon v. Abbott,” Journal of Law, Medicine & Ethics, 26 (1998): 225–40.CrossRefGoogle Scholar
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).Google Scholar
See Tex. Lab. Code Ann. §§ 21.410–.402.Google Scholar
See Minn. Stat. § 363.02, subdiv. 1, (9)(I) (West 1991).Google Scholar
See Minn. Stat. § 363.03, subdiv. 1a (West 1998). The ADA has no comparable provision. See generally Rothstein, M.A., “Legal and Ethical Aspects of Medical Screening,” Occupational Medicine: State of the Art Reviews, 3, no. 1 (1996): 31.Google Scholar
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).Google Scholar
See Rothstein, M.A. Gelb, B.D. Craig, S.G., “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): 399417.CrossRefGoogle Scholar
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.)).Google Scholar