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Ask the cancer genetics team: testing and risk to insurance coverage

Q: My doctors have told me I should consider genetic testing. Should I be concerned about losing my health insurance?

A: Over the years, people considering genetic testing have often worried about whether results could be used against them. An important piece of federal legislation, the Genetic Information Nondiscrimination Act (GINA) of 2008, directly addresses this issue. GINA prohibits health insurers and employers from using genetic testing information to make coverage and employment decisions in most circumstances. Senator Ted Kennedy called GINA the "first major new civil rights bill of the new century." Many states, including Massachusetts, have genetic nondiscrimination legislation, in addition to GINA. We are reassured by legal protections and by the absence of documented cases of employment and health insurance discrimination based on genetic testing for cancer predisposition.

GINA does have some limitations, and life, disability, and long-term care insurance are not protected. For people who have had a diagnosis of cancer, genetic testing is unlikely to change considerations for these types of insurance. Those who have not had a diagnosis of cancer may wish to purchase life, disability, and/or long-term care insurance before pursuing genetic testing for cancer susceptibility. If you are considering genetic testing, it makes sense to assess your overall insurance situation and discuss any concerns with your genetic counselor. People with a strong family history of cancer should evaluate their insurance needs regardless of their plans for genetic testing. But it’s good to know that the health insurance and employment realms are generally well protected.

Learn more about GINA 2008 

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  • Center for Cancer Genetics and Prevention

  • Ask the Cancer Genetics Team

    • Do you have questions about genetic testing or are you wondering if you or someone in your family is at greater risk of developing cancer? Our cancer genetics team can help answer your questions.