Abstract
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.
Highlights
It has been 15 years since Burawoy exhorted sociologists to ‘engage multiple publics in multiple ways’, with the ideal of reducing the gap between ‘the sociological ethos’ and ‘the world we live in’ (Burawoy, 2005a: 4)
The data reported here came from secondorder codes on research practices, a subset of caring practices that described how parents fundraised for, read about, participated in, interpreted, promoted, shared and discussed research relating to Rett syndrome
The alignment of activism with research participation increased the risk of exploitation as interviewees continued to express a sense of obligation to participate even when facing mental health or life challenges. This example is drawn from medical sociology it has a wider application to sociological research that competes for participants with other disciplines
Summary
It has been 15 years since Burawoy exhorted sociologists to ‘engage multiple publics in multiple ways’, with the ideal of reducing the gap between ‘the sociological ethos’ and ‘the world we live in’ (Burawoy, 2005a: 4). In this article I explore a potential research public’s perspectives on research participation: parents of people with Rett syndrome. This can provide localised, informative case studies that can create a wider understanding of how potential research publics may interpret sociological research in relation to the research of other disciplines.
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