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Genetic Discrimination

As genetic tests become more readily available, the potential grows for discrimination against people based on their genetic information. For example, It is possible that a woman's insurance company may deny her coverage after she is discovered to have a genetic disposition towards breast cancer, even though she shows no symptoms of the disease.

There have been a number of documented cases of people or their relatives who have lost jobs or insurance coverage based on reported genetic "abnormalities." This issue is addressed by policy-making bodies at various levels of government:

  • Federal legislation
    The first federal law to address issues relating to genetic discrimination was the Health Insurance Portability and Accountability Act (HIPAA) of 1996. In May of 2008, the Genetic Information Non-Discrimination Act (GINA) was signed into law. GINA prohibits health insurers from using genetic information to determine eligibility or premiums, prohibits insurers and employers from requesting or requiring that a person undergo a genetic test, and prohibits employers from using genetic information to make employment decisions.
  • State legislation
    The NHGRI website provides a database of current state legislation relating to health insurance and employment discrimination as well as summaries and links to foreign laws and reports on issues of genetics.
  • Executive order
    In February 2000, President Clinton banned genetic discrimination when he issued Executive Order 13145 to Prohibit Discrimination in Federal Employment Based on Genetic Information. The Executive Order prohibits discrimination against any federal employee based on protected genetic information, or information about a request for or the receipt of genetic services.