Abstract
Huntington’s disease (HD) is a progressive neurodegenerative disease that causes motor and cognitive impairment. Symptom onset is typically during adulthood and HD is inherited in an autosomal dominant manner. Predictive testing is available for at-risk individuals who desire to learn whether they have inherited the HD gene mutation. Factors contributing to the decision regarding predictive testing have been studied many times in the at-risk population. Few studies, however, have focused on the partners of these individuals to explore their views and opinions about predictive testing. In this study, we interviewed the spouses of six individuals who underwent presymptomatic predictive testing to better understand their thoughts, feelings, and specific roles throughout the decision-making process. Several important findings emerged from the interviews. First, we found that spouses preferred earlier predictive testing than their at-risk partner, but remained extremely supportive of their partner’s decision to delay testing. Second, we identified a lack of understanding regarding the full purpose and benefits of pre-test counseling sessions. Two of the six couples opted out of pre-test counseling through an HD center because ‘they already knew what HD was,’ but ended up receiving inadequate information and support. Finally, we provide further evidence that spouses’ needs for additional support following a positive test result for HD are often overlooked. Genetic counselors possess the necessary training to assist couples through the decision-making process, educate them regarding pertinent information during a pre-test counseling session, and provide support as well as resources to these patients and their families.