Intentions to use predictive testing by those at risk for Huntington's disease: implications for prevention

Abstract

Huntington's disease (HD) is a late onset, genetic disorder that is incurable and undetectable until the onset of symptoms. A marker for the gene that causes HD was recently discovered which will lead to a predictive test. The purpose of this research was to assess the knowledge, attitudes, beliefs, and behavioral intentions concerning the impending predictive test by those at risk for HD. Results indicated that a majority of participants favored using the test presymptomatically and would encourage their adult children to use it as well. Fewer participants favored using the predictive test prenatally or on minors. Characteristics that best differentiated those who intend and do not intend to use predictive testing were identified and discussed. Suggestions for interventions were presented with an emphasis on outreach and prevention programs designed to prepare HD families for the difficult decisions the predictive test will precipitate and the subsequent impact of those decisions.