The Republican Bid to End Genetic Privacy Would Ruin Me

Three years after the Social Security Administration declared me totally and permanently disabled, I decided to give up my Social Security Disability Insurance (SSDI) benefits and give working another try. After months of looking, I began a new job three weeks ago. Two weeks after I started, Republicans introduced a new bill in Congress that would give employers the right to order their employees to undergo genetic testing—and access their results.

I have mitochondrial disease—a progressive genetic disease that targets my muscles, eyes, and organs—and over time it has had a serious impact on my ability to work. I've tried hard over the last few years to find a treatment plan that would enable me to return to work, but that effort may soon be for nothing. My days on the job could be numbered if my new employer has access to my genetic test results, and that's exactly what a new bill in Congress would give them.

The bill, called the "Preserving Employee Wellness Act," expands what employers can legally require as part of their "employee wellness programs" to include genetic testing, as long as participation in the program itself is "voluntary." Don't get too excited about the voluntary aspect of the program, though. If you opt out of these employee wellness programs, your employer can legally discriminate against you by raising your health insurance premiums by up to 30 percent (even 50 percent in some cases). Many people would be forced to choose between affordable health insurance and medical privacy.

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