Walking the tightrope: Expectations and standards in personal genomics

Item Type

Language

English

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. © 2013 Macmillan Publishers Ltd.

Subject

Direct-to-consumer genetic testing
Personal genomics
Personalised medicine
Regulation
Sociology of expectations
Standardisation

Publication Title

Publication Year

2013

Publication Date

2013

Source

Scopus

License

Physical Description

vol. 8, n. 2, pp. 181-204

Short Title

Walking the tightrope

Citer cette ressource

Walking the tightrope: Expectations and standards in personal genomics, dans Science & Ignorance, consulté le 21 Novembre 2024, https://ignorancestudies.inist.fr/s/science-ignorance/item/4714

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