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“Genetic discrimination refers to discrimination directed against an individual or family based solely on an apparent or perceived genetic variation from the ‘normal’ human genotype.” Billings, P.R. et al., “Discrimination as a Consequence of Genetic Testing,” American Journal of Human Genetics, 50 (1992): At 476.Google Scholar

This is not to imply that fear of genetic discrimination is not an issue in the life and disability income insurance context as well. However, this article, like most legislative approaches to date, focuses on health insurance. But see Ariz. Rev. Stat. Ann. § 20-448 (1989); and Mont. Code Ann. § 33-18-206 (1991) (life and disability insurance).Google Scholar

See Billings, et al., supra note 2. See also Hudson, K. et al., “Genetic Discrimination and Health Insurance: An Urgent Need for Reform,” Science, 270 (1995): 391–93.Google Scholar

State insurance reforms have addressed community rating, preexisting condition clauses, portability, guaranteed issue, and renewal. For a description of recent state legislative activity on health care reform, see generally Ladenheim, K. Lipson, L. Markus, A., Health Care Reform: 50 State Profiles (Washington, D.C.: George Washington University Intergovernmental Health Policy Project, 1994); and Parde, D. Popolo, C., Health Care Reform in the States: A Special Report on State Health Care Reform Initiatives (Alexandria: Council for Affordable Health Insurance, 1994).Google Scholar

This summary is based on two excellent discussions describing health insurance. See Advances in Genetic Information: A Guide for State Policy Makers (Lexington: Council of State Governments, 1993); and Genetic Information and Health Insurance (Bethesda: Task Force on Genetic Information and Insurance, NIH-DOE Working Group on Ethical, Legal, and Social Implications of Human Genome Research, 1993).Google Scholar

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On March 15, 1995, the Equal Employment Opportunity Commission clarified that “disability” applies to individuals who are subjected to discrimination on the basis of genetic information relating to illness, disease, or other disorders. To illustrate their policy further, one example of genetic discrimination based on genetic information concerns an individual with an increased susceptibility to colon cancer. Equal Employment Opportunity Commission, Compliance Manual: Definition of the Term “Disability” (Mar. 15, 1995): § 902.Google Scholar

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See Hudson, et al., supra note 4, at 392.Google Scholar

See, for example, the Health Insurance Reform Act of 1995 (S. 1028), introduced by Senator Kassebaum on July 13, 1995. The Labor and Human Resources Committee on Senate Bill 1028 did state, however, that genetic information is to be included in its prohibitions against denying coverage based on health status or medical history. The Clinton administration's proposal for health care reform did prohibit limiting access or coverage on the basis of “existing medical conditions or genetic predisposition to medical conditions.” Id. (citing the Health Security Act, § 1516, S. 1757/H.R. 3600).Google Scholar

Hudson, et al., supra note 4, at 392.Google Scholar

The NIH-DOE ELSI Working Group has a “broad and diverse membership including genome scientists; medical geneticists; experts in law, ethics and philosophy; and consumers, to explore and propose options for the development of sound professional and public policies related to human genome research and its applications.” Id.Google Scholar

NAPBC is a “public-private partnership designed to eradicate breast cancer as a threat to the lives of American women,” and it “has identified genetic discrimination in health insurance as a high priority.” Id. at 393.Google Scholar

These recommendations have been endorsed by the National Advisory Council on Human Genome Research. Id.Google Scholar

Id. Furthermore, legislation should provide enforcement mechanisms, including civil and criminal liability, to assure that insurance entities comply with these provisions. For example, as noted earlier, California provides that negligent and willful disclosure of genetic test results without authorization is subject to civil and criminal liability. Cal. Ins. Code § 10147(b) (1994).Google Scholar

Since November 1995, a few federal bills that address genetic discrimination and privacy have been introduced; they include the Genetic Privacy and Nondiscrimination Act of 1995 (S. 1416), introduced by Senator Hatfield, and a similar bill (H.R. 2690), introduced by Representative Stearns. In addition, Representative Slaughter introduced the Genetic Information Nondiscrimination in Health Insurance Act of 1995 (H.R. 2748), which integrates the four recommendations developed by ELSI and NAPBC. Senator Feinstein is also considering the introduction of similar insurance legislation in the Senate. With respect to privacy, Senator Bennett has introduced the Medical Records Confidentiality Act of 1995 (S. 1360), which generally addresses health information and privacy, but does not specifically consider genetic information.Google Scholar