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


  • Geelen, Els
  • Van Hoyweghen, Ine
  • Horstman, Klasien


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.

Suggested Citation

  • 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.
  • Handle: RePEc:eee:socmed:v:72:y:2011:i:11:p:1752-1759

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    References listed on IDEAS

    1. Wertz, Dorothy C., 1992. "Ethical and legal implications of the new genetics: Issues for discussion," Social Science & Medicine, Elsevier, vol. 35(4), pages 495-505, August.
    2. Koch, Lene & Nordahl Svendsen, Mette, 2005. "Providing solutions-defining problems: the imperative of disease prevention in genetic counselling," Social Science & Medicine, Elsevier, vol. 60(4), pages 823-832, February.
    3. 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.
    4. Taylor, Sandra D., 2004. "Predictive genetic test decisions for Huntington's disease: context, appraisal and new moral imperatives," Social Science & Medicine, Elsevier, vol. 58(1), pages 137-149, January.
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    Cited by:

    1. Buchbinder, Mara & Timmermans, Stefan, 2011. "Newborn screening and maternal diagnosis: Rethinking family benefit," Social Science & Medicine, Elsevier, vol. 73(7), pages 1014-1018.


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