Couple Relationships and HD Testing

Is there a theory on how predictive testing affects couple relationships?

Yes, a perspective called family systems theory, developed over the past few decades, has proven particularly useful in genetic counseling. This theory is especially relevant to the genetic counseling of couple relationships because its central focus is on the family rather than the individual. The family systems theory describes human behavior as a consequence of family relationship patterns, rather than individual psychology. Consequently, family systems theory can help explain the effects of predictive testing on couple relationships by analyzing how family relationship patterns can influence post-test behavior.

In a 2004 study by Richards and Williams, 43 couples were divided into two groups: those that chose to undergo predictive testing and those that chose not to. Couples in both groups answered the same questionnaire before predictive testing, then 6 months later (3 months after those tested received their test results), and again 24 months after the first questionnaire. The questionnaire consisted of 32 Dyadic Adjustment Scale questions that measured couple relationship functioning, known as a "couple score." Those couples that received higher couple scores frequently interacted and communicated with each other, rarely disagreed with each other on significant marital issues, and settled disagreements in a way that was satisfying to both partners.

The major finding of this study was that, over the 24 month period, there was no statistically significant difference in couple scores between couples who had decided to undergo predictive testing and couples who had decided not to. The key conclusion was that predictive testing has few negative effects on couple relationships. As the authors noted, this conclusion matches the findings of several other studies (Tibben et al., 1993a; Cordori and Brandt, 1994; Quaid and Wesson, 1995; Taylor and Myers, 1997. For a look at these studies, please see "For Further Reading" at the end of this chapter).

An additional finding from the 2004 study is interesting. The couples that underwent predictive testing were categorized into couples in which the at-risk partner was a carrier and couples in which the at-risk partner was a non-carrier. Unexpectedly, the carrier couples had higher couple scores (stronger couple relationships) of statistical significance than the non-carrier couples. This suggests that, for some couples, the knowledge that their at-risk partner did not have HD had a greater negative effect on their marital relationship than the knowledge that their partner did have HD. The authors give a possible explanation: "The threat of HD may have served as a factor in the continuance of the relationship. Once this threat is removed, partners may no longer feel a duty or need to remain in the marriage to care or to be cared for."

Another possible explanation is provided by examining family patterns via family systems theory rather than individual behavior. Family systems theory suggests that the couple relationship can be negatively affected when one or both partners have different expectations for the predictive test’s results. When the results prove to be different from expectations, conflict can arise contributing to relationship deterioration and lower couple scores. Studies by Huggins et al. and Soldan et al. have found that professional genetic counseling can benefit the couple relationship by helping partners discuss their expectations of the predictive test’s results and their coping strategies (See "Further Reading" below for links to these two studies).

Last Modified: 07/07/2007

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