Can you keep a (genetic) secret? The genetic privacy movement

Abstract

This paper reviews the literature on genetic privacy, especially since 1995 and the first proposal for national genetic privacy legislation. Since that time, a majority of states have passed some form of genetic privacy legislation, and efforts to pass federal legislation are ongoing. Such new laws, however, remain untested in the courts and their effects are unclear. If they fail to provide additional protections against discrimination for most people, their most significant impact may be in their ability to either diminish or enhance the power of genetic information and to influence the way individuals view themselves and others. How does "genetic exceptionalism" - the idea that genetic information is different from other types of medical information - relate to "genetic essentialism" - the idea that we are to a large extent shaped by our genes Anthropological views on genetics and personhood bring a new perspective to this ongoing debate. Implications for counseling practices are also explored.