Risk of Discrimination
Learn about laws and legal protections that impact the hereditary cancer community. Learn how to file a grievance or complaint.

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Genetic discrimination is rare

According to the National Institutes of Health (NIH), genetic discrimination happens when you are treated differently because you have a gene mutation that causes or increases the risk of certain diseases. Documented cases of genetic discrimination are rare. Still, studies show that people with inherited disorders or inherited risk of a disease such as cancer are concerned about genetic discrimination. This concern may keep them from having genetic tests that could help them make health care decisions and outcomes, or make them fear getting involved in medical research that could provide better information and choices for people affected by hereditary diseases in the future.

Dr. Francis Collins is an American doctor and geneticist who discovered the genes connected to a number of diseases and led the Human Genome Project. He is also the director of the National Institutes of Health. Dr. Collins notes that all diseases are affected by hereditary factors. Therefore, many people may be at risk of genetic discrimination.

It is important for anyone considering genetic testing to understand the  protecting Americans against discrimination and their limits, and to weigh the possible benefits and risks of a genetic test. The decision to have genetic testing is very personal and should be based on current, credible information provided by a health care provider with genetics expertise.