Q: If I take a genetic test and learn I’m at high risk for a disease, could I lose my health insurance or have my premium raised?
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A: This is a question that a lot of patients have. The Genetic Information Nondiscrimination Act, or GINA, was passed a little over 10 years ago to address this question specifically. It’s a federal law that prevents medical insurers from raising your rates or dropping your coverage based on genetic test results. It also prevents people from employment discrimination based on genetic testing.
The law, however, does not prevent people from discrimination related to life insurance or long-term care or disability insurance. Different states have other laws related to that, but that’s not covered by this specifically.
The other thing is that it’s really just related to genetic test results, especially predictive tests where you don’t have symptoms but you’re trying to figure out your risks. If you’ve already been diagnosed with a condition, then GINA doesn’t cover you anymore. In that case you would fall into some of the other laws related to preexisting conditions.
— Genetic counselor Allison Schreiber
