Issues in Genetics

Genetic Discrimination

Art image of chains and over DNA microarray

Overview of Genetic Discrimination

While most Americans are optimistic about the use of genetic information to improve health, many are concerned that genetic information may be used by insurers to deny, limit or cancel health insurance, and by employers to discriminate in the workplace. They are worried that some insurers may choose not to insure people who are healthy but genetically pre-disposed to future disease onset: such people incur more health-related costs for the insurance company than individuals who are not predisposed. Similarly, they fear that some employers might only employ or retain individuals who are not pre-disposed to future disease onset, since healthy individuals are more productive. Therefore, many lawmakers, scientists and health advocacy groups believe that there is a need for federal legislation to prevent genetic discrimination.

We now have that legislation:

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Legislation on Genetic Discrimination

Genetic Nondiscrimination Federal Legislation Archive

National Conference of State Legislatures (NCSL) Summaries of State Genetics Laws

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NHGRI Interest in Genetic NonDiscrimination Legislation

Concerns and Activities
Public fears about genetic discrimination mean that many individuals do not participate in important biomedical research at the NIH. Many patients also refuse genetic diagnostic tests that help doctors identify and treat diseases: they worry that they will lose their health insurance if it is proven that they are genetically pre-disposed to a disease. NHGRI believes that legislation that gives comprehensive protection against all forms of genetic discrimination is necessary to ensure that biomedical research continues to advance. Similarly, it believes that such legislation is necessary so that patients are comfortable availing themselves to genetic diagnostic tests.

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NHGRI Policy Recommendations for Genetic Discrimination in Insurance or Employment

In the mid 1990s, the National Institutes of Health-Department of Energy (NIH-DOE) Ethical, Legal and Social Implications (ELSI) Working Group and the National Action Plan on Breast Cancer (NAPBC) [] cosponsored workshops on genetic discrimination in health insurance and the workplace. The findings and recommendations of the workshops were published in Science. They are the foundation for policy-making in the Executive branch, and for legislation at both the state and federal level.

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Reports On Genetic Discrimination

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Last Updated: June 25, 2012