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Session II – Ethical Implications Of Genome Medicine

Mapping public policy on genetics

Gene Therapy volume 9, pages 662–666 (2002)Cite this article

Abstract

The mapping of the human genome and related advances in genetics are stimulating the development of public policies on genetics. Certain notions that currently prevail in public policy development overall – including the importance of protecting privacy of information, an interest in cost-effectiveness, and the power of the anecdote – will help determine the future of public policy on genetics. Information areas affected include discrimination by insurers and employers, confidentiality, genetic databanks, genetic testing in law enforcement, and court-ordered genetic testing in civil cases. Service issues address clinical standards, insurance benefits, allocation of resources, and screening of populations at risk. Supply issues encompass funding of research and clinical positions. Likely government actions include, among others: (1) Requiring individual consent for the disclosure of personal information, except when such consent would impose inordinate costs; (2) licensing genetic databases; (3) allowing courts to use personal information in cases where a refusal to use such information would offend the public; (4) mandating health insurers to pay for cost-effective genetic services; (5) funding pharmaceutical research to develop tailored products to prevent or treat diseases; and (6) funding training programs.

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Acknowledgements

Appreciation is extended to Karen Cuozzo for assistance in research and to Dieter C Gruenert, PhD for review of the manuscript.

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  1. Medical Society of New Jersey, Lawrenceville, NJ, USA

    N E Weisfeld

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  1. N E Weisfeld
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Weisfeld, N. Mapping public policy on genetics. Gene Ther 9, 662–666 (2002). https://doi.org/10.1038/sj.gt.3301751

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