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When Does an Illness Begin: Genetic Discrimination and Disease Manifestation

Published online by Cambridge University Press:  01 January 2021

Anya E. R. Prince  and
Benjamin E. Berkman
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Extract

Congress passed the Genetic Information Nondiscrimination Act of 2008 (GINA) in order to remove a perceived barrier to clinical genetic testing. By banning health insurance companies and employers from discriminating against an individual based on his or her genetic information, legislators hoped that patients would be encouraged to seek genetic testing that could improve health outcomes and provide opportunities for preventive measures. Their explicit legislative goal was to fully protect the public from discrimination and allay their concerns about the potential for discrimination, thereby allowing individuals to take advantage of genetic testing, technologies, research, and new therapies.

However, GINA left a number of issues unresolved, most notably failing to define the concept of disease manifestation. GINA was structured such that it only provides protection against misuse of genetic information up until the point when an individual's disease has manifested. It protects an individual with a genetic predisposition for a disease, but not an individual actively suffering from that disease.

Type
Independent
Information
Journal of Law, Medicine & Ethics , Volume 40 , Issue 3 , Fall 2012 , pp. 655 - 664
Copyright
Copyright © American Society of Law, Medicine and Ethics 2012

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