The new genetics and health: mobilizing lay expertise

Abstract

Public understanding of the new genetics is often criticized in discussions about the social and ethical issues the new genetics raise. In this paper we challenge the “deficit model” evident in this dominant discourse, and offer a constructivist approach. We explore lay expertise about the new genetics, presenting an analysis of data from ten focus group discussions with a range of lay people. After distinguishing four different types of knowledge lay people hold—technical, methodological, institutional, and cultural—we go on to consider how lay people's mobilization of this “stock of knowledge” is influenced by social location and social context, exploring in particular interviewees' perceptions of relevancy. We conclude that identifying lay people as expert in, rather than ignorant of, the way genetics may shape their lives is a fundamental first step in moving toward greater lay participation in policy discussions and, ultimately, decision making about the new genetics and health.