Couple Relationships and HD Testing

Conclusions

It is clear from these studies that the psychosocial impact of predictive testing on the couple relationship is complex, with a number of factors that contribute to both positive and negative outcomes. First, the Richards and Williams study shows that pre-test discussion by the couple can be very helpful to their relationship. Such discussion can better prepare the couple for the test result by encouraging understanding of each other’s expectations of and reactions to the test result. In particular, this pre-test assessment can help identify particular challenges that the couple may face after the testing and may lead to re-consideration of testing in the first place. Complementing the Richards and Williams study, the Decruyenaere study shows the importance of post-test counseling. Post-test counseling can help protect against adverse effects of predictive testing by encouraging open discussion of each partner’s concerns as well as identification of any potential role-shifts that may disrupt the couple relationship.

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-C. A. Chen 5-7-07

For further reading:

• Decruyenaere M, Evers-Kiebooms G, Cloostermans T, Boogaerts A, Demyttenaere K, Dom R, Fryns JP. Predictive testing for Huntington's disease: relationship with partners after testing. Clinical Genetics. 2004 Jan;65(1):24-31.
  This study is not only easy-to-read but also optimistic in its finding that most marital relationships remained the same five years after predictive testing, regardless of the test results.
  
• Evers-Kiebooms G, Swerts A, Cassiman JJ, Van den Berghe H. The motivation of at-risk individuals and their partners in deciding for or against predictive testing for Huntington's disease . Clinical Genetics. 1989 Jan;35(1):29-40.
  This early study found that the majority of at-risk persons and their partners looked favorably upon predictive testing, although the at-risk individual and his/her partner's reasons for deciding to take the test varied. This study took place before predictive testing began in 1993; however, the couples' explanations for deciding on predictive testing are still eye-opening and relevant.
  
• Huggins et al. Predictive testing for Huntington disease in Canada : Adverse effects and unexpected results in those receiving a decreased risk . 1992 Am J Med Genet 42:508-515.
  
• Richards F, and Williams K. Impact on couple relationships of predictive testing for Huntington disease: a longitudinal study. American Journal of Medical Genetics Part A. 2004 Apr 15;126(2):161-9.
  This is an easy-to-read article that is especially interesting because of its discussion on the benefits of pre- and post-test counseling.
  
• Soldan et al. Psychological model for presymptomatic test interviews: Lessons learned from Huntington disease . 2000 J Genet Couns 9:15-31.
  

Studies, in addition to Richards and Williams 2004, that found few negative effects of predictive testing on couple relationships:

• Codori AM, et al. Psychological costs and benefits of predictive testing for Huntington's disease. 1994 Am J Med Genet 54:174-184.
  
• Quaid KA, et al. Exploration of the effects of predictive testing for Huntington disease on intimate relationships. 1995 Am J Med Genet 57:46-51.
  
• Taylor CA, et al. Long-term impact of Huntington disease linkage testing . 1997 Am J Med Genet 70:365-370.
  
• Tibben A, et al. On attitudes and appreciation 6 months after predictive DNA testing for Huntington disease in the Dutch program . 1993 Am J Med Genet 48:103-111.

Last Modified: 08/04/2008

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