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Genetic Testing: Ethical Issues - Support Mechanisms

social medical disease decisions families

Several support mechanisms exist for dealing with the complex decisions and ethical issues arising from the medical application of genetic testing. In the past, much genetic testing has been carried out by medical specialists with disease-specific expertise who have an understanding of the medical, psychosocial, and family implications of diagnoses of particular genetic diseases. Genetic support groups have also been established for education and mutual support among patients and families with genetic disorders. An organization called the Genetic Alliance provides a referral source to connect individuals with appropriate support groups and information about genetic disorders.

Typically, the best resource for an integrated approach to support for patients and families is a genetic counselor. Genetic counselors provide factual education about genetic disease inheritance, how to understand risk and medical probabilities, and the range of options for care. They also provide counseling to help patients and families to clarify and articulate their own values and motivations in order to make the most appropriate decisions. These may be decisions about whether to undergo a genetic test or how they may act on receiving the results of a test.

Carol L. Freund

and Jeremy Sugarman


Burgess, M. M. "Beyond Consent: Ethical and Social Issues in Genetic Testing." National Review of Genetics 2 (2000): 147-151.

Ross, L. F., and M. R. Moon. "Ethical Issues in Genetic Testing of Children." Archives of Pediatrics and Adolescent Medicine 154 (2000): 873-879.

Scriver, C. R., et al., eds. The Metabolic and Molecular Bases of Inherited Disease, 8th ed. New York: McGraw-Hill, 2001.

Welch, H. G., and W. Burke. "Uncertainties in Genetic Testing for Chronic Disease." Journal of the American Medical Association 280 (1998): 1525-1527.

Wilfond, B. S. "Genetic Testing." In Ethics in Primary Care, J. Sugarman, ed. New York: McGraw-Hill, 2000.

Internet Resources

Genetic Alliance. <http://www.geneticalliance.org/>.

Secretary's Advisory Committee on Genetic Testing. <http://www4.od.nih.gov/oba/sacgt.htm>.

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