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Although some people cite fear of genetic discrimination as the reason they do not pursue genetic testing, documented cases of genetic discrimination are rare. Note that discrimination in life, long-term care, and disability insurance is legal in many states but most people are able to secure a policy. Still, studies show that people with inherited disorders or inherited risk are concerned about genetic discrimination. This concern may keep them from undergoing genetic tests that may benefit their health care decisions and outcomes. This fear may also deter people from becoming involved in medical research that could provide better information and choices for those affected by hereditary diseases in the future.
According to Dr. Francis Collins, director of the National Institutes of Health, 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 protective laws and their limits, and to weigh the potential benefits and risks of a genetic test. It is important to base the decision of whether or not to have genetic testing on credible and up-to-date information received from a health care provider with expertise in genetics.