Walking the tightrope : expectations and standards in personal genomics

Groves, Christopher and Tutton, Richard (2013) Walking the tightrope : expectations and standards in personal genomics. BioSocieties, 8 (2). pp. 181-204. ISSN 1745-8552

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Abstract

The sociology of expectations has examined ways in which future expectations shape how technological options are selected and stabilised. Personal genomic susceptibility testing (PGST) is introduced as an example of a technology where expectations serve a crucial role, thanks to the inherently future-oriented nature of testing for genetic susceptibility to future health conditions. Nonetheless, expectations may increase rather than decrease scientific, regulatory and commercial uncertainties surrounding a technology. Technology promoters may therefore enact particular strategies to prove that technologies are not in need of stringent, technology-specific regulation. With the aid of an extensive historical analysis of company websites, together with semi-structured interviews with company representatives, it is shown how four PGST companies based in the United States have used efforts towards collaborative standardisation as ways of stabilising and legitimating PGST in an often hostile environment. We explore how these strategies make use of expectations, and how they centre on the promotion of new ‘regulatory objects’ in an effort to influence regulatory agendas. Although processes of standardisation in the PGST industry have stalled, we suggest that they nonetheless represent successful engagement with regulators, insofar as they have succeeded in shaping regulatory agendas and staving off new regulation.

Item Type:
Journal Article
Journal or Publication Title:
BioSocieties
Uncontrolled Keywords:
/dk/atira/pure/subjectarea/asjc/2700/2719
Subjects:
?? direct-to-consumer genetic testing personal genomics personalised medicine regulation sociology of expectations standardisationhealth policyhealth(social science) ??
ID Code:
68322
Deposited By:
Deposited On:
24 Jan 2014 05:53
Refereed?:
Yes
Published?:
Published
Last Modified:
15 Jul 2024 14:28