Primer

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Although genetic tests provide valuable, and often lifesaving medical information, some people fear that if the result of a genetic test indicates that they have either a genetic disease or an increased risk of developing a disease, employers, insurance carriers, schools and others may discriminate against them. This is one reason some people prefer not to take tests that may indicate they could develop a serious disease, especially if there are currently no effective preventive measures or treatments.

One concern is that insurance companies or employers might deny life or health insurance coverage or charge higher rates for people who are at risk for a genetic illness. The insurance industry, however, argues that it must have access to the same information on individual policyholders that the policyholders themselves can access. Decisions about insurability are based on a variety of types of medical information, such as previous diagnoses.

Genetic Discrimination Protection
Some 40 states have enacted anti-discrimination legislation that addresses the use of genetic information by insurers (as of June 2001), and 29 states have legislation protecting employees from genetic discrimination (as of May 2001). Also, on February 8, 2000, President Clinton banned discrimination in the federal workplace based on genetic information.

The Americans with Disabilities Act offers protection from employment discrimination to individuals affected by a genetic condition or disease, and to individuals who are regarded as having a disability. The Federal Health Insurance Portability and Accountability Act of 1996 provides protections against discrimination in health insurance by limiting pre-existing condition exclusions. It also prohibits discrimination against individuals based on health status, including their genetic information.

The Biotechnology Industry Organization has long advocated legal protections to prevent genetic discrimination against individuals.

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