Genetic discrimination occurs when people are treated differently by their employer or insurance company because they have a gene mutation that causes or increases the risk of an inherited disorder. People who undergo genetic testing may be at risk for genetic discrimination.
The results of a genetic test are normally included in a person’s medical records. When a person applies for life, disability, or health insurance, the insurance company may ask to look at these records before making a decision about coverage. An employer may also have the right to look at an employee’s medical records. As a result, genetic test results could affect a person’s insurance coverage or employment. People making decisions about genetic testing should be aware that when test results are placed in their medical records, the results might not be kept private.
Fear of discrimination is a common concern among people considering genetic testing. Several laws at the federal and state levels help protect people against genetic discrimination; however, genetic testing is a fast-growing field and these laws don’t cover every situation.
For more information about privacy and genetic discrimination:
The National Human Genome Research Institute provides a detailed discussion of genetic discrimination and current laws that address this issue:
The Genetic Alliance offers links to resources and policy statements on genetic discrimination.
Additional information about policy and legislation related to genetic privacy is available from the U.S. Department of Energy Office of Science.
The Australian Research Council’s Genetic Discrimination Project is studying the impact of genetic discrimination on consumers, third parties (such as insurers), and the legal system in Australia.
Next: How does genetic testing in a research setting differ from clinical genetic testing?