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Genetic Privacy

Published online by Cambridge University Press:  01 January 2021

Lawrence O. Gostin
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Human genomic information is invested with enormous power in a scientifically motivated society. Genomic information has the capacity to produce a great deal of good for society. It can help identify and understand the etiology and pathophysiology of disease. In so doing, medicine and science can expand the ability to prevent and ameliorate human malady through genetic testing, treatment, and reproductive counseling.

Genomic information can just as powerfully serve less beneficent ends. Information can be used to discover deeply personal attributes of an individual's life. That information can be used to invade a person's private sphere, to alter a person's sense of self- and family identity, and to affect adversely opportunities in education, employment, and insurance. Genomic information can also affect families and ethnic groups that share genetic similarities.

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Article
Information
Journal of Law, Medicine & Ethics , Volume 23 , Issue 4 , Winter 1995 , pp. 320 - 330
Copyright
Copyright © American Society of Law, Medicine and Ethics 1995

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References

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The Medical Records Confidentiality Act, S. 1360, Cong. 104, Sess. 1 (1995), is pending. This statute would create a set of fair information practices for a wide range of health information.Google Scholar
In deriving these standards, the author appreciates the work of Professor Robert Weir of the National Human Genome Project and Joan Porter of the Office of Protection from Research Risks of the National Institutes of Health.Google Scholar