Would you be comfortable taking a genetic test to see if you had a genetic predisposition to certain diseases? Even if your doctors tell you it might be medically useful, would you be concerned that the results might somehow come back to harm you? Perhaps your employer might find out the results, and, depending on the results, worry about your future productivity? Or would you be concerned that your insurance company could find out and use this information to raise your health insurance rates?
Ninety percent of Americans feel that taking genetic tests leaves them open to this type of genetic discrimination. In response to these fears, and based on the observations of doctors that patients were not getting genetic information for medical purposes and not participating in research studies, Congress passed the Genetic Information Discrimination Act ("GINA"), which prohibits discrimination on the grounds of a person's genetic information in employment and in the provision of health insurance. Although GINA has been on the books since 2008, a recent survey found only 16 percent of people surveyed knew its protections existed. As in all areas, law takes time to work its way into culture.
I recently attended a conference in Ireland on the need for a European framework to deal with the problems of genetic discrimination in Ireland, cosponsored by the Centre for Disability Law and Policy, National University of Ireland, Galway and the Burton Blatt Institute at Syracuse University. The audience was academics, policymakers and government officials. The chair was Justice John McMenamin of the Irish High Court, and Marian Harkin, a member of the European Parliament, was in attendance. The conference got a nice write up in the Irish Times.