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Walking the tightrope: Expectations and standards in personal genomics

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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.

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Notes

  1. Some question whether this idea of personalised medicine is even coherent. See, for example, Busch (2011, p. 317, n. 16).

  2. Some limitations of our approach should be noted. The Internet Archive does not preserve webpages from Navigenics.com, as the company website is configured to prevent ‘bots’ (automated software applications used for tasks like indexing webpages) from indexing its content. Nonetheless, the company archives its press releases online, and a number of past interviews with senior staff, together with the interviews undertaken as part of this project, were also available. 23andMe and deCODEme were unavailable for interview, citing time pressures.

  3. References to webpages are given below in the text in the form (site, ‘page title’, date range), where the date range indicates the dates of the earliest and the most recent instances of the quoted text we found.

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Acknowledgements

The authors would like to thank Dr Andrew Bartlett, Professor Lawrence Busch, Dr Joan Haran and Professor Adam Hedgecoe for helpful comments on an earlier version of this article.

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Authors and Affiliations

  1. The ESRC Centre for Economic and Social Aspects of Genomics (Cesagen), School of Social Sciences, Cardiff University, 6 Museum Place, Cardiff, CF10 3BG, UK

    Christopher Groves

  2. The ESRC Centre for Economic and Social Aspects of Genomics (Cesagen), Department of Sociology, The ESRC Centre for Economic and Social Aspects of Genomics (Cesagen), Lancaster University, Bowland North, Lancaster, LA1 4YD, UK

    Richard Tutton

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Correspondence to Christopher Groves.

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Groves, C., Tutton, R. Walking the tightrope: Expectations and standards in personal genomics. BioSocieties 8, 181–204 (2013). https://doi.org/10.1057/biosoc.2013.1

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