• 04.07.16

2 crazy things I heard on my first call with a genetic counselor

I just got off the phone with a genetic counselor, who gave me an overview of what to expect when I get my whole genome sequenced this summer (fingers crossed!).  These were the two craziest things that came up on our call, which you should definitely know about if you plan to get a DNA test: 

Your primary care provider will very likely include the complete results of your genetic test in your electronic medical record. That might put you at risk of  being denied certain forms of insurance, including long-term care, disability, and life insurance. My genetic counselor recommended that I ask my doctor to include only the most medically relevant results, which is a bit sneaky but I’m planning to try it. Read our in-depth feature here about genetic discrimination.

Expect your primary care provider to have a patchy knowledge about genetics, at best. This is in line of a study we recently reported onwhich found that about 18% of patients were “not at all satisfied” with their experience sharing genetic test results with a physician.

I’ll keep sharing my experiences with you as I plough on with this process. Please reach out to me if you’ve been tested, and you have any stories of your own: