ABSTRACT

The new genetic health technologies are rapidly moving from laboratory research into clinical practice through a variety of pathways including the diagnosis, monitoring, prevention and treatment of a range of single and, increasingly, multi-factorial diseases. Serious concerns have arisen with suggestions that the next steps may include improving the gene pool, eliminating familial diseases, selecting traits for offspring, and perhaps even creating a superior species. Questions of privacy and fairness extend outside the clinical boundaries as the risk of genetic discrimination grows with the identification of each new disease susceptibility gene. This raises issues of ownership of genetic information as well as informed consent about its use in such diverse areas as insurance, employment, criminal justice, and education. The chapter presents a brief discussion about some of the methodological implications for social science research in this area, and particularly focuses on the use of qualitative methods.