Each time I address a group, I hear over and over that people might like to participate in genetic research or take a genetic test, but that they fear for the security of their health insurance and their job. Often, the two issues are linked together, because most Americans obtain their health insurance through their employer. In the case of self-insured companies, workers worry that their employer will have access to their medical records and test results and use that information to undermine their best interests. While some have dismissed these fears as overblown, they are not without foundation. At present, most cases of genetic discrimination in employment remain anecdotal, due largely to the fact that genetic testing is still relatively rare and many people are eschewing it for fear of discrimination.
Cases are, however, occurring.
On June 21, a young woman named Terri Seargent joined me at a press conference on genetic discrimination. Terri related the story of how, after years of excellent performance reviews, substantial raises, and promotions, she was summarily dismissed from her job after her employer learned that she was receiving a preventive treatment for a genetic condition. Not only did this action leave Terri and her family without her income, but it also deprived her of insurance coverage for the treatment that was keeping her healthy and fully functional. Many other victims of genetic discrimination are unwilling to come forward and speak publicly because they fear future discrimination. We know, however, of one woman who was terminated from her job the day after she informed her employer of a genetic diagnosis of a skeletal disorder.