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Although many people cite fear of genetic discrimination as the reason they do not pursue genetic testing, documented cases of genetic discrimination are rare. However, studies have shown that people with inherited disorders or inherited risk are still concerned about genetic discrimination. This concern may be keeping many people from taking advantage of genetic tests that could make a significant difference in their health care decisions and outcomes. This fear may also prevent people from becoming involved in the 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, anyone could be at risk for genetic discrimination. It is important for anyone considering genetic testing to understand the protective laws and their limits, and weigh the potential benefit of a genetic test against the risk of discrimination. It is important to base the decision whether or not to have genetic testing on credible and up-to-date information received from a health care provider with expertise in genetics.