Drawing the line: an analysis of lay people's discussions about the new genetics

Abstract

“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 range of lay people's accounts of drawing the line. We show that, beyond its rhetorical function, answering this question involves important discussions about genetic research, testing, regulation, and social provision for people who are sick or disabled. It raises difficult questions about clients' and service providers' autonomy and responsibility and about which human illnesses, conditions, and characteristics ought to be the subject of research and testing. In particular, we show how differences in the amount and type of information and advice available to clients of genetic testing, the level of social support to people with particular conditions, and people's perception of stigma, suffering, and quality of life, make drawing the line highly problematic. We end by discussing the implications of our analysis for policy making, considering how the ambiguities and tensions in lay accounts might enable, as opposed to stifle, greater democratization of the new genetics.