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01-12-2018 | Original Research

What to Do with a Second Chance in Life? Long-Term Experiences of Non-carriers of Huntington’s Disease

Authors: Elisabeth Winnberg, Ulrika Winnberg, Lilian Pohlkamp, Anette Hagberg

Published in: Journal of Genetic Counseling | Issue 6/2018

Abstract

Little is known about how people’s lives are influenced when going from a 50% risk status of Huntington’s disease (HD) to no risk after performing predictive testing. In this study, 20 interviews were conducted to explore the long-term (> 5 years) experiences after receiving predictive test results as a non-carrier of HD. The results showed a broad variety of both positive and negative reactions. The most prominent positive reaction reported was feelings of relief and gratitude, of not carrying the HD mutation for themselves and for their children. Also, the non-carrier status promoted in some individuals’ significant life changes such as a wishing to have (more) children, pursuing a career or breaking up from an unhappy relationship. However, negative reactions on their psychological well-being were also described. Some had experienced psychological pressure of needing to do something extraordinary in their lives; others expressed feelings of guilt towards affected or untested siblings, resulting in sadness or clinical depression. The new genetic risk status could generate a need of re-orientation, a process that for some persons took several years to accomplish. The results of the present study show the importance of offering long-term post-result counselling for non-carriers in order to deal with the psychological consequences that may follow predictive testing.

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Title: What to Do with a Second Chance in Life? Long-Term Experiences of Non-carriers of Huntington’s Disease
Authors: Elisabeth Winnberg
Ulrika Winnberg
Lilian Pohlkamp
Anette Hagberg
Publication date: 01-12-2018
Publisher: Springer US
Published in: Journal of Genetic Counseling / Issue 6/2018
Print ISSN: 1059-7700
Electronic ISSN: 1573-3599
DOI: https://doi.org/10.1007/s10897-018-0257-1

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