Adverse effects of predictive testing for Huntington disease underestimated: Long-term effects 7-10 years after the test

The 7-10-year psychological effects of presymptomatic testing for Huntington disease are described in 142 individuals and 104 partners. Questionnaires included the Beck Hopelessness Scale (A. T. Beck, A. Weissman, D. Lester, & L. Trexler, 1974), the Impact of Event Scale (M. J. Horowitz, N. Wilner, & W. Alvarez, 1979), and the General Health Questionnaire (D. P. Goldberg, 1972). Carriers and their partners were more distressed immediately after the test result, although their outlooks improved somewhat in the 2-3-year posttest period. However, they became more pessimistic thereafter, when approaching the age of onset. Carriers, who were lost to follow-up after disclosure of test results, reported more distress pretest than did retained carriers. This demonstrates that studies that report few harmful effects may have underestimated the real impact. Moreover, follow-up studies need to investigate time effects for longer than a few years.