Genetic discrimination in the United States and Europe

By Associate Dean Michael Waterstone

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.

I spoke about GINA's long journey through Congress. Despite the fact that it had broad support from the beginning (and ultimately passed 95-0 in the Senate and 414-1 in the House), it was first introduced in 1994, and was not actually enacted until 2008. In my view, the small but dedicated opposition came from two sources. First, GINA was originally introduced as part of a national dialogue on health care, and once that discussion fell apart and turned politically toxic, the concept of genetic discrimination had to be delicately extricated. Second, GINA got caught up in the general concerns about tort reform; in particular, the business community was concerned that it would create a whole new wave of lawsuits against employers.

Ultimately, as passed, GINA is both modest and revolutionary. Modest, because it just prohibits discrimination on the basis of genetic information in employment and the provision of health insurance. There are large legal issues relating to genetic information and genetic privacy that GINA does not touch: the preference of parents for certain genetic features in unborn children, the use of genetic information in life insurance policies, and the use of stem cells to further genetic science. Yet GINA is also revolutionary: usually, in our antidiscrimination law, Congress looks backward, building a record of discrimination in a particular area before it acts. Yet despite widespread fears of genetic discrimination, GINA was passed without much evidence that this was actually occurring on a large scale. To critics, this meant it was a "remedy in search of a problem." To supporters, GINA represented a rare opportunity for the law to get out ahead of a problem and proactively create a culture that this type of discrimination is not acceptable.

Moving forward, the next step for Europe is likely to convene a hearing and take testimony at the European Parliament. I hope to stay involved in this project; it is a great opportunity to share the US experiences and learn from colleagues in other countries.