Abstract
Genetic discrimination is becoming an increasingly important problem in the United States. Information acquired from genetic tests has been used by insurance companies to reject applications for insurance policies and to refuse payment for the treatment of illnesses. Numerous states and the United States Congress have passed or are considering passage of laws that would forbid such use of genetic information by health insurance companies. Here we argue that much of this legislation is severely flawed because of the difficulty in distinguishing genetic from nongenetic tests. In addition, barring the use by insurance companies of a genetic test but not a nongenetic test (conceivably for the same multifactorial disease) raises issues of fairness in health insurance. These arguments suggest that ultimately the problems arising from genetic discrimination cannot be solved by narrowly focused legislation but only by a modification of the entire health care system.
Similar content being viewed by others
References
Billings, P.R., Kohn, M.A., deCuevas, M., Beckwith, J., Alper, J.S. & Natowicz, M.R. (1992) Discrimination as a consequence of genetic testing. American Journal of Human Genetics 50: 476–482.
Geller, L.N., Alper, J.S., Billings, P.R., Barash, C.I., Beckwith, J. & Natowicz, M.R. (1996) Individual, family and societal dimensions of genetic discrimination: a case study analysis. Science and Engineering Ethics 2: 71–88.
Yesley, M.S. (1997) Genetic privacy, discrimination, and social policy: Challenges and dilemmas. Microbial & Comparative Genomics 2: 19–35.
Andrews, L.B., Fullarton, J.E., Holtzman, N.A., Motulsky, A.G. (1994) Assessing Genetic Risks: Implications for Health and Social Policy. National Academy Press, Washington, D.C..
Task Force on Genetic Information and Insurance & NIH/DOE Working Group on Ethical Legal and Social Implications of Human Genome Research (1993) Genetic Information and Health Insurance. NIH/DOE, Bethesda.
Wolf, S. (1995) Beyond ‘genetic discrimination’: Toward the broader harm of geneticism. Journal of Law, Medicine and Ethics 23: 345–353.
Beckwith, J. (1993) A historical view of social responsibility in genetics, BioScience 43, #5: 327–333.
Meschede, D., Eigel, A., Horst, J. & Nieschlag, E. (1993) Compound heterozygosity for the deltaF508 and F508C cystic fibrosis transmembrane regulator (CFTR) mutations in a patient with congenital bilateral aplase of the vas deferens. American Journal of Human Genetics 53: 292–293.
Rubinsztein, D.C., Leggo, J., Coles, R., et al. (1996) 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: 16–22.
Task force on Genetic Testing of the NIH-DOE Working Group on Ethical Legal and Social Implications of the Human Genome Project (1997) Interim Principles.
Nelkin, D. & Lindee, M.S. (1995) The DNA Mystique: The Gene as a Cultural Icon, W.H. Freeman, New York.
Couch, F.J., DeShano, M.L., Blackwood, M.A., Calzone, K., Stopfer, J., Campeau, L., Ganguly, A., Rebbeck, T. & Weber, B.L., (1997) BRCA1 mutations in women attending clinics that evaluate the risk of breast cancer. New England Journal of Medicine 336: 1409–1415.
Alper, J.S., Geller, L.N., Barash, C.I., Billings, P.R., Laden, V. & Natowicz, M.R. (1994) Genetic discrimination and screening for hemochromatosis. Journal of Public Health Policy 12: 345–358.
Equal Employment Opportunity Commission (1995) Compliance Manual, Volume 2, EEOC Order 915.002, Section 902.
Equal Employment Opportunity Commission (1991) Letter, dated November 22, 1991 from Acting Director of Communications and Legislative Affairs, EEOC, Robert Blumenthal, to Representative Bob Wise, Chairman, House Subcommittee on Government Information, Justice and Agriculture, Washington, D.C.
Equal Employment Opportunity Commission (1991) Letter dated August 2, 1991, from Elizabeth M. Thornton, Deputy Legal Counsel, EEOC, to Paul Berg and Sheldon Wolff, Co-Chairmen of the NIH-DOE Joint Subcommittee on the Human Genome.
Preston, J. (1996) Trenton votes to put strict limits on use of gene tests by insurers. The New York Times, June 18: A1,B6.
Author information
Authors and Affiliations
Rights and permissions
About this article
Cite this article
Alper, J.S., Beckwith, J. Distinguishing genetic from nongenetic medical tests: Some implications for antidiscrimination legislation. SCI ENG ETHICS 4, 141–150 (1998). https://doi.org/10.1007/s11948-998-0044-8
Received:
Revised:
Accepted:
Issue Date:
DOI: https://doi.org/10.1007/s11948-998-0044-8