When I began seeing patients for cancer genetic counseling and testing back in the mid 1990s, one of the greatest fears our patients expressed was that genetic testing could tank their insurability. Frankly, genetic counselors shared this fear. We were entering uncharted territory and had no roadmap or history to show us how our patients’ data would be used.

If a healthy patient tested positive for a genetic mutation placing her at increased risk to someday develop cancer, would it make it impossible for her to find health insurance? For those already insured, would their premiums go up? If a patient changed jobs, would he have a difficult time getting reinsured? Could his genetic status even prevent him from getting that job or being promoted?

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