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Genetic Discrimination in the Workplace

Published online by Cambridge University Press:  01 January 2021

Paul Steven Miller
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The surge in genetic research and technology, fuelled in large part by the Human Genome Project, has resulted in the continuing expansion of the range of genetic tests and other genetic information available to physicians, insurance companies, employers, and the general public.’ Genetic tests can provide presymptomatic medical information about an individual, including information about an individual's increased risk of future disease, disability, or early death. These tests can reveal information about an individual's carrier status, that is, the likelihood of parents passing on to their children a genetic condition, and about the health of the individual's family members. Although genetic information provides the promise of early detection and treatment of certain illnesses and disorders, it also poses risks. As a result of the increase in genetic testing and information, legal issues regarding employment discrimination on the basis of genetic information are emerging.

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Article
Information
Journal of Law, Medicine & Ethics , Volume 26 , Issue 3 , Fall 1998 , pp. 189 - 197
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Copyright © American Society of Law, Medicine and Ethics 1998

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References

The Human Genome Project (HGP) is a coordinated, international research effort, jointly managed by the U.S. Department of Energy and the National Institutes of Health, to analyze the structure of human DNA and to map and sequence the estimated 50,000 to 100,000 human genes. The HGP will improve technology for biomedical research and influence medicine, including reproductive planning, prenatal diagnosis and treatment, and preventive and therapeutic health treatment for a range of genetically related illnesses. Recognizing that the acquisition and use of genetic information has enormous individual and societal implications, analysis of the ethical, legal, and social implications of genetic knowledge has been an important component of the HGP research effort. For a discussion of the HGP, see, for example, National Human Genome Research Institute, The Human Genome Project (visited Oct. 27, 1998) <http://www.nhgri.nih.gov/HGP>; Patrinos, A. Drell, D.W., “Introducing the Human Genome Project: Its Relevance, Triumphs, and Challenges,” The Judges' Journal, 36 (1997): 3, 5–10; and Rothstein, M.A., “Genetic Discrimination in Employment and the Americans with Disabilities Act,” Houston Law Review, 29 (1992): At 24–25.Google Scholar
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As Karen Rothenberg has noted, this lack of data is not surprising because there is an inherent problem in documenting actual genetic discrimination: Because individuals must reveal that they have, or are at risk for, genetic abnormalities in order to register a discrimination complaint, many will not file a complaint because they have too much to lose by revealing this confidential information. See Kopinsky, S.M., “Genetic Discrimination is Less Widespread than Feared,” Health Care News Server (Nov. 20, 1997) <http://www.healthcarenewsserver.com/stories/HCN1997112000021.shtml> (reporting Rothenberg's comments at an October 29, 1997 panel on Genetic Testing in the Marketplace).+(reporting+Rothenberg's+comments+at+an+October+29,+1997+panel+on+Genetic+Testing+in+the+Marketplace).>Google Scholar
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