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Tentative (id)entities: On technopolitical cultures and the experiencing of genetic testing

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Abstract

The practices around genetic testing for hereditary breast and ovarian cancer in one major counselling centre in Austria are at the core of this article. Our study investigates how people undergoing genetic testing try to make sense of this experience that is perceived to be new and uncommon in Austria and that is thus taking place in a setting not validated through public insurance support and is not yet embedded in any greater societal narrative about its merits, perils and overall value. In particular we aim at exploring what genetic testing means on the individual level but also how it relates people to different forms of collectives – ‘genetic families’, ‘hybrid collectives’ and larger ‘biosocialities’. We will follow how as tested persons are transformed into ‘biomedical entities’, novel forms of identities are co-produced. In our analysis thus both entities and identities appear as inherently tentative as people move through the spacio-temporal landscape of biomedicine and society. People's accounts of genetic testing will be shown as deeply entangled with a specifically Austrian technopolitical culture, with broader civic epistemologies prevalent there, but also with diverse other thought-styles of social communities that people are part of. Investigating genetic testing in Austria in such a manner is meant to raise awareness of how much local differences in technopolitical cultures might matter when it comes to the implementation and uptake of a seemingly global biomedical technology.

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Notes

  1. Genetic testing for HBOC was neither state-funded nor covered by health insurance; though there was some public funding available from 2007 to 2010, it is unclear if this will continue.

  2. 6th Framework Programme: Contract No. SAS6-CT-2003-510238 (project coordinator and principal investigator for the Austrian team: Ulrike Felt).

  3. Permission EK-Nr. 20/2006.

  4. Her feeling was confirmed by the test and at the time of the interview she had already undergone mastectomy.

  5. For the detailed criteria, see http://www.meduniwien.ac.at/brustCC/index.php?id=11#a5 (in German, last accessed 9 February 2011).

  6. See for example, Hallowell, 1999; d’Agincourt-Canning, 2001; Hallowell et al, 2005, 2006; Gibbon, 2007.

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Acknowledgements

The data on which this article is based have been collected within the framework of the European research project ‘Challenges of Biomedicine – Socio-cultural Contexts, European Governance and Bioethics’, funded by the European Commission under the 6th framework programme, ‘Science and Society’, Contract no. SAS6-CT-2003-510238. The authors thank the interviewees for sharing their experiences with genetic testing as well as numerous intimate parts of their lives. Further this research would not have been possible without the support of the head of the counselling centre. We further acknowledge the valuable help we got from the centre's psychologists present during the interviews. Finally our thanks go to five referees, the editor and our colleague Maximilian Fochler for their constructive criticism and suggestions. Martha Kenney's help in doing the final language editing is also highly appreciated.

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  1. Department of Social Studies of Science, University of Vienna, Sensengasse 8/10, Vienna, 1090, Austria

    Ulrike Felt & Ruth Müller

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  1. Ulrike Felt
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Felt, U., Müller, R. Tentative (id)entities: On technopolitical cultures and the experiencing of genetic testing. BioSocieties 6, 342–363 (2011). https://doi.org/10.1057/biosoc.2011.5

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