Knowledge, attitude, and the decision to be tested for Huntington's disease

In September 1986, the Baltimore Huntington's Disease Project initiated a voluntary program of presymptomatic genetic testing for Huntington's Disease (HD). Forty-seven persons at 50% risk for HD attended one of two educational sessions designed to educate them about the test. At the beginning and end of each session, subjects completed the Affect Adjective Checklist and a set of questions assessing knowledge about and attitude toward presymptomatic testing. As a result of attending an educational session, subjects learned more about presymptomatic testing, and their attitude towards finding out whether they had the marker for the HD gene became more favorable. Fewer people requested genetic testing than expected. Those who later chose to undergo genetic testing had a more favorable attitude at both the beginning and at the end of the educational session. The significance of these data for genetic counselors is discussed.