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Between responsibility and obligation: The need for a solidarity-based framework for psychiatric genetic research participation

Thomas, Julia 2021. Between responsibility and obligation: The need for a solidarity-based framework for psychiatric genetic research participation. PhD Thesis, Cardiff University.
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Psychiatric genetic research has become ‘big biology’, relying heavily on willing donations from its many participants. However, psychiatric genetic research also has a contested history including resistance to biomedical accounts of psychiatric conditions. This makes engagement with its various publics a challenge for psychiatric genetics. At the centre of these debates, there is a gap in our understanding of the social processes surrounding participation and this is particularly true in the context of psychiatric genetic research. This thesis is about what psychiatric genetic research participation means to researchers, mental health professionals, and people with experience of psychiatric conditions. It uses Q methodology to elicit four styles of thought that highlight tensions within efforts to recruit participants to psychiatric genetic research. Individuals are broadly categorised as (1) untroubled, (2) strategic, (3) concerned and (4) cautious in relation to participation; each group is analysed in detail using in-depth discussions of the Q methodology statements. The findings tell a story of how psychiatric genetic researchers have worked to bypass powerful gatekeepers to their participants and, in doing so, have attempted to foster a sense of community to attract and retain participants. These apparently benevolent, but also strategic, attempts at “giving back” are entangled with the demands of everyday science and of recruiting participants. Appealing to a sense of responsibility that verges on moral obligation creates a tension that has been difficult for researchers to navigate. Ultimately, I argue that the idea of participation as an altruistic ‘gift’ is increasingly ineffective, and that, following Prainsack and Buyx (2017), psychiatric genetic research participation should be reframed in terms of solidarity, radically changing what it means to be a participant.

Item Type: Thesis (PhD)
Date Type: Completion
Status: Unpublished
Schools: Social Sciences (Includes Criminology and Education)
Subjects: H Social Sciences > H Social Sciences (General)
Funders: ESRC
Date of First Compliant Deposit: 11 October 2021
Last Modified: 10 Dec 2022 02:55

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