ABSTRACT

First, this chapter further interrogates what is meant by ‘public engagement’, showing how social movement theory (SMT) tools and principles have informed both a definition of public engagement with human genetics, and the accompanying methodology for studying it. Hybrid, fluid publics are shown to be engaging with human genetics in many different contexts. This first section also defines, and provides examples of, the sorts of public engagement identified during the research. Second, the chapter discusses the qualitative methods which formed the basis for data collection. Third, this chapter introduces a ‘cast list’ of the different publics whose voices are heard throughout the book. This section introduces the two case study sites which were the core focus of qualitative research; environmental social justice and Disability Rights groups who for various reasons tend to be cautious about or critical of human genetics applications; and patient groups and their supporters, who tend to be extremely supportive of them. This section also introduces other civil society groups who are engaging in the debates, noting that scientists, policy makers and the media are also key ‘prime movers’. An overview of ‘the general public’ and how ‘the general public’ engages, or could engage, with human genetics provides further reflections on concepts of hybrid civil society.