Exploration of the effects of predictive testing for Huntington disease on intimate relationships

Abstract

The focus in predictive testing for Hunting‐ton disease is beginning to shift from individuals at risk to an examination of the effects on other relatives, particularly on spouses and partners. We examine the effects of participating in a predictive testing program for 25 couples. When assessed prior to testing, spouses were significantly more depressed than their at‐risk partners. After pretest counseling, 6 (24%) of the couples chose not to pursue testing. At baseline, these 6 couples had significantly higher levels of psychological distress and marital dysfunction than couples who did choose to complete testing. Of the 19 couples completing testing, 5 received an increased risk result and 14 received a decreased risk result. Prior to testing, the partners of individuals who later received an increased risk result exhibited higher levels of marital distress. At 3‐ and 6‐month follow‐ups, high‐risk couples were significantly more distressed than low‐risk couples. These levels of distress improved somewhat at 9 months after testing, but began to climb again at 12 months. Individuals at increased risk were significantly more distressed at all points during follow‐up as compared to individuals at low risk. No significant differences were found between the partners of high‐ and low‐risk individuals at 3, 6, 9, and 12 months after disclosure. The significance of these findings and the need to include partners in pretest counseling prior to genetic testing are discussed.