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Practicing engagement: Participation in the UK BioResource

Research output: Chapter in Book/Report/Conference proceedingConference paper

Original languageEnglish
Title of host publicationSociety for the Social Studies of Science (4S) and the European Association for the Study of Science and Technology (EASST) Conference
Place of PublicationBarcelona
Publication statusPublished - 3 Sep 2016

King's Authors

Abstract

The National Institute for Health Research (NIHR), the research arm of the UK National Health Service, is investing in research infrastructures. One such infrastructure, the NIHR BioResource, on the surface appears to be a typical biobank - it stores biological samples and the derived data for research purposes. However, there is at least one crucial difference, the banked resource is not the samples and data but the potential, stratified, research participants. BioResource staff recruit those with and without health problems as volunteers for future research studies. These volunteers provide biological samples containing genetic information which is sequenced and, along with clinical data, databased. Researchers from academia and commercial pharmaceutical industries can then apply to the BioResource for volunteers that meet specific genotypic or phenotypic criteria and invite them to take part in research. As such, the BioResource offers a case study of a novel form of biobank participation which is, in part, dependent on the successful recruitment of volunteers and the development and nurturing of a relationship between bank and these individuals. Using participant observation and semi-structured interviews with those involved in the engagement process, this paper explores how notions of future (bio)value and social responsibility along with the creation of a volunteers "community" intertwine in the processes of planning and practicing BioResource engagement for different publics. This paper contributes to extant STS literature by providing an insight into a different configuration of biosocial participation and its implications for the future of personalised medicine.

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