Genetic testing and family entanglements
Genetic testing and family entanglements
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.
Communication, Entanglement, Family, Genetic testing, Huntington's disease, Social science, United Kingdom, ‘New genetics’
Dimmond, Rebecca
846e8837-d19f-4f2b-a54b-c999a8fac8b1
Doheny, Shane
a7cab2c1-b348-41c5-85d3-322900282f64
Ballard, Lisa
48a7b1af-4d2b-4ec7-8927-84361a3c62a9
Clarke, Angus
30f3d3dd-3caa-4465-82e8-a8c4316dfaa1
April 2022
Dimmond, Rebecca
846e8837-d19f-4f2b-a54b-c999a8fac8b1
Doheny, Shane
a7cab2c1-b348-41c5-85d3-322900282f64
Ballard, Lisa
48a7b1af-4d2b-4ec7-8927-84361a3c62a9
Clarke, Angus
30f3d3dd-3caa-4465-82e8-a8c4316dfaa1
Dimmond, Rebecca, Doheny, Shane, Ballard, Lisa and Clarke, Angus
(2022)
Genetic testing and family entanglements.
Social Science & Medicine, 298, [114857].
(doi:10.1016/j.socscimed.2022.114857).
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.
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Genetic testing and family entanglements
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More information
Accepted/In Press date: 22 February 2022
e-pub ahead of print date: 24 February 2022
Published date: April 2022
Additional Information:
Funding Information:
The research on which this paper is based was funded by the Economic and Social Research Council (ESRC) Project Grant ES/R003092/1 .
Publisher Copyright:
© 2022 The Authors
Keywords:
Communication, Entanglement, Family, Genetic testing, Huntington's disease, Social science, United Kingdom, ‘New genetics’
Identifiers
Local EPrints ID: 455813
URI: http://eprints.soton.ac.uk/id/eprint/455813
ISSN: 0277-9536
PURE UUID: 7cf2bada-aa31-4c73-8dfb-5a9b00e5279e
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Date deposited: 05 Apr 2022 17:18
Last modified: 17 Mar 2024 03:37
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Contributors
Author:
Rebecca Dimmond
Author:
Shane Doheny
Author:
Angus Clarke
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