Understanding our potential research publics: Exploring boundary disputes in recruitment to a sociological study

• Published in: Current sociology 2019-09, Vol.67 (5), p.742-759
• Main Author: Hope, Joanna
• Format: Article
• Language: English
• Subjects: Activism; Boundaries; Case studies; Discourses; Disputes; Dropping out; Exploitation; Fatigue; Fund raising; Genetic research; Genetics; Individualism; Participation; Recruitment; Refusal; Rett syndrome; Social interventions; Social participation; Sociological research; Sociology; Understanding
• ISSN: 0011-3921; 1461-7064
• DOI: 10.1177/0011392119846937

The international debate on public sociology has failed to increase our understanding of how we might engage with new publics, particularly potential research publics. Parallel literatures exploring over-research, research fatigue, non-response and public (mis)understanding of sociology can shed light on how underlying boundary disciplinary issues might influence willingness to participate in sociological research. This article explores the case study of parents of people with Rett syndrome, an over-researched group at the centre of competing research discourses following a breakthrough in genetic research. Data from a wider study was used to explore reasons for research participation, non-participation and dropout, including interviews (n = 20) and a brief survey about reasons for non-response (n = 58). An individualist perspective led to interpretations of social interventions as stigmatising and refusal to participate. Parent activists fundraising for and promoting genetic research challenged notions of voluntary groups as being receptive to organic public sociology. While individual benefits were experienced, there were signs of research fatigue from multiple approaches. Finally, the close link between social activism and research participation increased the risk of unwitting exploitation, an issue of concern for organic public sociology.