Making genetics not so important: family work in dealing with familial hypertrophic cardiomyopathy

Social Science & Medicine
Els GeelenKlasien Horstman

Abstract

The literature shows that genetic testing could stimulate solidarity among family members, but also lead to major conflicts. To prevent negative effects, clinical geneticists and ethicists have stressed the importance of 'good communication' within families. In this qualitative study, we followed six extended families in the southern and eastern Netherlands involved in genetic testing for familial hypertrophic cardiomyopathy for three and a half years. In total 57 members of these families were interviewed in depth, most more than once. Our analysis shows that genetic testing does affect families, but that families perform a lot of 'balancing work' in order to prevent genetic testing from becoming too all-encompassing. There is much more continuity in family life than is often thought. Moreover, as these families demonstrate different styles of family work, establishing a single norm of 'good communication' in clinical genetics might in fact be more harmful for family life than genetic testing itself.

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Citations

Feb 13, 2016·Sociology of Health & Illness·Daniele CarrieriPeter Turnpenny
Aug 13, 2011·Social Science & Medicine·Mara Buchbinder, Stefan Timmermans
Jul 9, 2011·American Journal of Medical Genetics. Part a·Els GeelenKlasien Horstman
Aug 21, 2013·Sociology of Health & Illness·Paul AtkinsonMaggie Gregory
Jul 3, 2013·Journal of Nursing Scholarship : an Official Publication of Sigma Theta Tau International Honor Society of Nursing·Kim Subasic
Jun 15, 2011·Social Science & Medicine·Klasien Horstman, Kaja Finkler
Nov 2, 2016·Sociology of Health & Illness·Debra SkinnerMartha King
Jul 24, 2012·AJOB Primary Research·Dorit BarlevySiobhan M Dolan
Nov 18, 2017·Sociology of Health & Illness·Tanya Stivers, Stefan Timmermans
Jul 18, 2017·Family Process·Álvaro MendesJorge Sequeiros
Mar 2, 2018·Journal of Genetic Counseling·Lisa L Shah, Sandra Daack-Hirsch
Jul 1, 2017·Journal of Health and Social Behavior·Stefan Timmermans, Tanya Stivers
Aug 20, 2018·Journal of Community Genetics·Janella HudsonSusan T Vadaparampil
Apr 29, 2020·European Journal of Human Genetics : EJHG·Amicia PhillipsDanya F Vears

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