Genetic Information and the Workplace: Legislative Approaches and Policy Challenges

Author:

Rothenberg Karen12,Fuller Barbara13,Rothstein Mark14,Duster Troy15,Kahn Mary Jo Ellis16,Cunningham Rita17,Fine Beth18,Hudson Kathy19,King Mary-Claire110,Murphy Patricia111,Swergold Gary112,Collins Francis113

Affiliation:

1. The authors are members of the Committee on Genetic Information and the Workplace of the National Action Plan on Breast Cancer (NAPBC) and the National Institutes of Health-Department of Energy Working Group on Ethical, Legal and Social Implications of Human Genome Research (the ELSI Working Group).

2. K. Rothenberg is director of the Law and Health Care Program, University of Maryland School of Law, and chair of the Committee on Genetic Information and the Workplace and is a member of the NAPBC.

3. B. Fuller is with the NAPBC.

4. M. Rothstein is at the Health Law and Policy Institute, University of Houston Law Center, and a member of the NAPBC.

5. T. Duster is at the Institute for the Study of Social Change, University of California, Berkeley, and is chair of the ELSI Working Group.

6. M. J. Ellis Kahn is with the Virginia Breast Cancer Foundation and is co-chair of the NAPBC Hereditary Susceptibility Working Group.

7. R. Cunningham is with the African American Breast Cancer Alliance of Minnesota and is a member of the NAPBC.

8. B. Fine is at Northwestern University Medical School and is a member of the ELSI Working Group.

9. K. Hudson is at the National Human Genome Research Institute, National Institutes of Health.

10. M.-C. King is with the Division of Medical Genetics, University of Washington, and is a member of the NAPBC.

11. P. Murphy is with OncorMed, Gaithersburg, MD, and is a member of the NAPBC.

12. G. Swergold is at the Center for Biologics Evaluation and Research, U.S. Food and Drug Administration, and is a member of the NAPBC.

13. F. Collins is at the National Human Genome Research Institute, National Institutes of Health, and is co-chair of the NAPBC Hereditary Susceptibility Working Group.

Abstract

The use of genetic information in the workplace poses societal risks that have an impact on employment possibilities, health insurance, and privacy. Individuals who might otherwise believe they can benefit from genetic testing may decline it because of their fear of employment discrimination and lack of privacy in the workplace. As a consequence, the future of research on the benefits and risks of predictive genetic testing may also be compromised. Thus, policy-makers need to evaluate legislative and regulatory strategies to address these concerns. This paper analyzes state and federal legislative approaches to genetic information in the workplace and concludes with a discussion of policy considerations and recommendation.

Publisher

American Association for the Advancement of Science (AAAS)

Subject

Multidisciplinary

Reference30 articles.

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4. Genetic Discrimination: Perspectives of Consumers

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