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Genetic testing and family entanglements

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  • Dimond, Rebecca
  • Doheny, Shane
  • Ballard, Lisa
  • Clarke, Angus

Abstract

The development of the ‘new genetics’ in the early 1990's opened up a new space which required some patients and families to understand and navigate genetic testing. The social science literature that has grown alongside the ‘new genetics’, now spanning more than thirty years, has continued to explore and question assumptions about attitudes and responses towards genetic technologies. In this article we highlight how individual experience of genetic disease and personal responses towards genetic technologies can only be understood by considering their context. We focus on the rich literature on family within sociology, science and technology studies, anthropology, and family studies, to explore the myriad ways in which family is implicated in the patient experience of genetic testing. We explore these connections by drawing on a set of interviews held with individuals who have undergone a predictive test for a genetic condition, including Huntington's Disease and breast cancer. Five themes were developed: family disclosure, family gatekeeping, going for testing, individual and collective communication practices, and receiving a negative test result. To conclude, we highlight how these connections might be considered through the lens of entanglement, explaining the complex mechanisms through which family and genetics are intimately entwined.

Suggested Citation

  • Dimond, Rebecca & Doheny, Shane & Ballard, Lisa & Clarke, Angus, 2022. "Genetic testing and family entanglements," Social Science & Medicine, Elsevier, vol. 298(C).
    • Handle: RePEc:eee:socmed:v:298:y:2022:i:c:s0277953622001630
    DOI: 10.1016/j.socscimed.2022.114857
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    References listed on IDEAS

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    1. Geelen, Els & Van Hoyweghen, Ine & Horstman, Klasien, 2011. "Making genetics not so important: Family work in dealing with familial hypertrophic cardiomyopathy," Social Science & Medicine, Elsevier, vol. 72(11), pages 1752-1759, June.
    2. Arribas-Ayllon, Michael & Sarangi, Srikant & Clarke, Angus, 2008. "Managing self-responsibility through other-oriented blame: Family accounts of genetic testing," Social Science & Medicine, Elsevier, vol. 66(7), pages 1521-1532, April.
    3. Nunes, João Arriscado & Ferreira, Patrícia & Queirós, Filipa, 2014. "Taking part: Engaging knowledge on health in clinical encounters," Social Science & Medicine, Elsevier, vol. 123(C), pages 194-201.
    4. McDougall, A. & Goldszmidt, M. & Kinsella, E.A. & Smith, S. & Lingard, L., 2016. "Collaboration and entanglement: An actor-network theory analysis of team-based intraprofessional care for patients with advanced heart failure," Social Science & Medicine, Elsevier, vol. 164(C), pages 108-117.
    5. Rabeharisoa, Vololona, 2006. "From representation to mediation: The shaping of collective mobilization on muscular dystrophy in France," Social Science & Medicine, Elsevier, vol. 62(3), pages 564-576, February.
    6. Mwale, Shadreck, 2020. "‘Becoming-with’ a repeat healthy volunteer: Managing and negotiating trust among repeat healthy volunteers in commercial clinical drug trials," Social Science & Medicine, Elsevier, vol. 245(C).
    7. Weiner, Kate, 2011. "Exploring genetic responsibility for the self, family and kin in the case of hereditary raised cholesterol," Social Science & Medicine, Elsevier, vol. 72(11), pages 1760-1767, June.
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