Genetic testing and family entanglements

Dimond, Rebecca ORCID: https://orcid.org/0000-0003-1974-7289, Doheny, Shane ORCID: https://orcid.org/0000-0003-0529-7301 and Clarke, Angus ORCID: https://orcid.org/0000-0002-1200-9286 2022. Genetic testing and family entanglements. Social Science & Medicine 298 , 114857. 10.1016/j.socscimed.2022.114857

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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. Previous article in issue

Item Type:	Article
Date Type:	Publication
Status:	Published
Schools:	Social Sciences (Includes Criminology and Education) Business (Including Economics) Medicine
Publisher:	Elsevier
ISSN:	0277-9536
Funders:	ESRC
Date of First Compliant Deposit:	9 March 2022
Date of Acceptance:	22 February 2022
Last Modified:	22 Oct 2023 01:05
URI:	https://orca.cardiff.ac.uk/id/eprint/148207

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