Couple Relationships and HD Testing
Introduction
Huntington’s disease presents unique psychosocial issues due to its late onset and hereditary nature. One of the major issues of course is stress, which can come from many sources and has many effects (for general discussion of stress and HD, click here. A major source of psychosocial stress associated with HD comes from predictive testing which became available in the United States in 1993.
Extensive research has focused on the person undergoing predictive testing, with a good number of studies reporting that the tested person’s benefit from the knowledge of their genetic status outweighed their post-test psychosocial distress. However, less research has focused on the psychological impact that predictive testing may have on those at risk for HD and their partners, family and friends. This research is important because HD affects many more people than just the person who has it. Moreover, the hereditary nature of the disease can also lead to difficult questions about reproduction and about the possibility of other family members having the disease.
Fortunately, researchers are now focusing more of their attention on predictive testing and its effects on the couple relationship. In the remainder of this section, we review their key findings to date.
What percentage of couples looks favorably upon predictive testing? And what motivations drive their decisions?
In a 1989 study in Belgium, where HD predictive testing has been available since 1987, Evers-Kiebooms found that a moderate majority of people at-risk for HD and their non-carrier partners looked positively on predictive testing. Out of 349 study subjects, 66% of the at-risk adults and 74% of their partners wanted testing for the at-risk individual. The difference between these percentages can partly be explained by the difference in motivations between the at-risk person and his/her partner in approving the predictive testing. When asked why they approved, at-risk adults tended to cite worries about their futures, while their partners tended to cite worries about current and/or future children. A reason that some couples decided not to undergo predictive testing was concern about the effects of the testing on their relationship; this concern was more often a major consideration for non-carrier partners than for the at-risk adults. (For specifics on the process of HD predictive testing, please click here.
Last Modified: 05/24/2009