Original Research

Journal of Genetic Counseling

, Volume 22, Issue 3, pp 336-344

How Do Partners Find out About the Risk of Huntington’s Disease in Couple Relationships?

  • Karen Forrest KeenanAffiliated withHealth Services Research Unit, University of Aberdeen Email author 
  • , Sheila A. SimpsonAffiliated withMedical Genetics, University of Aberdeen
  • , Zosia MiedzybrodzkaAffiliated withMedical Genetics, University of Aberdeen
  • , David A. AlexanderAffiliated withAberdeen Centre for Trauma Research, Faculty of Health and Social Care, The Robert Gordon University
  • , June SemperAffiliated withMedical Genetics, University of Aberdeen

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Whilst a growing body of work has explored family communication about Huntington’s disease and how at-risk individuals learn about their risk, the experience of telling a partner and partners’ experiences of finding out about this potentially devastating hereditary illness have received little attention. This study describes the experiences of partners in finding out about Huntington’s disease and any impact on couple’s relationships/marriages. We undertook a thematic analysis of qualitative interviews which explored the dynamics of partners’ marriages after predictive testing and partners’ views of genetic counseling. A main theme from partners’ accounts was how they found out about their spouse’s risk of Huntington’s disease and the impact this had on marital relations. The analysis revealed four types of disclosure experiences: (1) marital secrets; (2) alerting, but not telling; (3) knowing and seeing; (4) marital ignorance. Our findings demonstrate that partners’ experiences of (non)disclosure about the risk of HD within marriages is an important factor which contributes to couples’ coping or marital problems. Exploring how spouses found out about their partner’s risk of HD will illuminate issues about a couple’s past and future patterns of communication and their coping strategies. A practical and ethical implication is the extent to which genetic counselors should inform partners about the course and nature of Huntington’s disease when a partner is the support person for the individual being tested.


Huntington’s disease Disclosure Partners Genetic counseling Qualitative research