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Shaping the future and living in the present: Living a ‘good’ life with a familial heart disease

Abstract

In genetic counselling practices, individuals are explicitly encouraged to take an active stance towards their future. The premise is that, by considering their genetic risks and taking preventive measures, they have some control over their future life and health. However, it is unclear how families engaged in genetic testing actually deal with the promises of genetic test results, and how they perceive their future. This qualitative study aims to provide insight into the way in which families shape and live their lives with genetic risks. How do they navigate life with a familial heart disease? We followed six extended families involved in genetic testing for hypertrophic cardiomyopathy in the Netherlands for 4 years. The present analysis of four of these families reveals how they make sense of the future in various ways and perceive the opportunities for control. Whereas some families strongly believe the future can be shaped in some way, others are reluctant, do not believe in or even protest against the notion that genetic testing will help them to shape their future lives. We conclude that in the pursuit of Nussbaum’s notion of the ‘good’ life, ‘shaping the future’ and ‘living in the present’ are not opposing or mutually exclusive repertoires; instead, traces of both are apparent in all four case studies.

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Acknowledgements

This article is part of a project financed by the Netherlands Organisation for Scientific Research (NWO). The authors thank all participating families.

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Correspondence to Els Geelen.

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Geelen, E., Van Hoyweghen, I. & Horstman, K. Shaping the future and living in the present: Living a ‘good’ life with a familial heart disease. BioSocieties 10, 70–83 (2015). https://doi.org/10.1057/biosoc.2014.41

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  • DOI: https://doi.org/10.1057/biosoc.2014.41

Keywords

  • good life
  • future
  • time
  • decision making
  • pre-symptomatic genetic testing
  • hypertrophic cardiomyopathy