Assessing the psychological impact of predictive testing for Huntington disease on young adults

Literature on the psychological impact of predictive testing for Huntington disease (HD) lacks information about younger generations of at-risk individuals. Unlike older generations tested in the past, young adults at risk for HD now have the option of learning their risk status before making marital and reproductive decisions. Through interviews with at-risk young adults and their partners, this study qualitatively examined the factors involved in the decision-making process of whether or not to undergo predictive testing for HD. Interviews focused on attitudes toward marriage and childbearing, and whether or not knowledge about prenatal diagnosis for HD has any influence on future life plans. For all at-risk respondents and their partners, reasons in favor of predictive testing for HD involved the importance of knowing one's risk status for reproductive decision-making, relief from uncertainty and the hope of early preventative medical intervention should test results come back positive for this devastating, late-onset disorder.