How Gene Testing Forced Me to Reveal My Private Health Information

The first time a doctor told me he had no idea what was wrong with me, I was six or seven years old. As I grew up, my mysterious health problems—ranging from muscle weakness and debilitating fatigue to gastrointestinal issues and pins and needles in my hands and feet—were blamed on everything from my imagination to stress.. But when I hit my early 30s and began struggling to breathe, my doctors finally took my symptoms seriously.

I didn't get an answer right away. I was tested, misdiagnosed, and tested some more before my doctors finally had an idea: mitochondrial disease. Unlike many diseases, mitochondrial disease is a rare disorder that requires genetic confirmation to make a formal diagnosis.

Insurance was the last thing on my mind when my doctor suggested I have my genes tested. All I wanted was an answer and a treatment plan, and without a diagnosis there was little anyone could do. I had no idea that my genetic test results could prevent me from obtaining insurance coverage in the future—and I doubt most people who...