DRAWING THE LINE - AN ANALYSIS OF LAY PEOPLES DISCUSSIONS ABOUT THE NEW GENETICS

''Where do we draw the line?'' is a question that is frequently asked in discussions about the new genetics. In this paper we explore a rang e of lay people's accounts of drawing the line. We show that, beyond i ts rhetorical function, answering this question involves important dis cussions about genetic research, testing, regulation, and social provi sion for people who are sick or disabled. It raises difficult question s about clients' and service providers' autonomy and responsibility an d about which human illnesses, conditions, and characteristics ought t o be the subject of research and testing. In particular, we show how d ifferences in the amount and type of information and advice available to clients of genetic testing, the level of social support to people w ith particular conditions, and people's perception of stigma suffering , and quality of life, make drawing the line highly problematic. We en d by discussing the implications of our analysis for policy making, co nsidering how the ambiguities and tensions in lay accounts might enabl e, as opposed to stifle, greater democratization of the new genetics.