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Genetic Testing and Privacy

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Genetic testing isn’t anonymous; your name will be on the test order and the results, which will then become part of your medical record. The testing company is not allowed to reveal your results to anyone except your doctor. Even though medical records are confidential, many people have concerns that a positive genetic test result — one that suggests increased lifetime cancer risk — could lead to discrimination by their employer and/or health insurance plan.

If you are a United States citizen, you’re most likely protected by the Genetic Information Nondiscrimination Act of 2008 (GINA), which forbids certain, but not all, employers and health insurers from making decisions based on genetic information. However, other types of insurance plans, such as life, disability, and long-term care, are not subject to GINA. So it’s important to try to secure these types of insurance before you have genetic testing. (If you’re a resident of a country other than the U.S., do some research to find out your legal rights. For instance, many European nations have passed nondiscrimination laws.)

Some people ask about having genetic testing done under an assumed name or paying out of pocket to avoid putting it through their health insurance plan because they hope this might provide some protection against discrimination if they were found to be at higher-than-average risk of developing cancer. Cristina Nixon, M.S., LCGC, a licensed certified genetic counselor with the Cancer Risk Assessment and Genetics Program at Main Line Health in Pennsylvania, advises against doing this. She notes that people who test positive likely will want to take action based on those results, whether this means having more frequent cancer screenings, taking risk-reducing medications such as tamoxifen, or having a risk-reducing surgery such as mastectomy or ovary removal. Most patients need their health insurance plan to cover these costs, so it makes sense to have testing done using your real identity and insurance coverage.

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