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Protecting genetic privacy

Nature Reviews Genetics volume 2, pages 392–396 (2001)Cite this article

Abstract

This article outlines the arguments for and against new rules to protect genetic privacy. We explain why genetic information is different to other sensitive medical information, why researchers and biotechnology companies have opposed new rules to protect genetic privacy (and favour anti-discrimination laws instead), and discuss what can be done to protect privacy in relation to genetic-sequence information and to DNA samples themselves.

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Acknowledgements

The authors thank their colleague, Leonard H. Glantz, for his contribution to formulating the policy recommendations presented in this article.

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Authors and Affiliations

  1. Health Law Department, Boston University School of Public Health, 715 Albany Street, Boston, 02118, Massachusetts, USA

    Patricia A. Roche & George J. Annas

Authors
  1. Patricia A. Roche
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  2. George J. Annas
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DATABASE LINKS

Huntington disease

phenylketonuria

FURTHER INFORMATION

European Data Protection Directive

US Food and Drug Administration

deCODE Genetics

First Genetic Trust

UK Population Biomedical Collection

Medical Research Council

the Wellcome Trust

Ardais Corporation

Autogen Ltd

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Roche, P., Annas, G. Protecting genetic privacy. Nat Rev Genet 2, 392–396 (2001). https://doi.org/10.1038/35072029

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