Health policy and the new genetics

The purpose of this paper is to stimulate debate on the implications of the new genetics for health policy. Although there are different streams within the social science literature on the new genetics, the primary focus has been on the meaning of genetic testing from the perspective of the individual tested. While essential to understand, it does not add much to the health policy debate. A very different type of information has been produced by the public health and epidemiological literature, focused on screening for genetic disease and concerned with rates of detection, costs and benefits, and evaluation criteria. These data are very important to planning and implementing the type of prenatal screening program already in existence; they do not deal with issues central to the new genetics, such as commercialization, patenting and insurance. The problem is how best these topics should be researched. The final section of the paper suggests that given a phenomenon--the new genetics--which is both multifaceted and very complex, very new and yet with strong historical and cultural roots, we need a matching research agenda. One that breaks out of traditional paradigms separating one method from another and seeks information on the new genetics wherever it may be found.