NONPARTICIPATION IN PREDICTIVE TESTING FOR HUNTINGTONS-DISEASE - INDIVIDUAL DECISION-MAKING, PERSONALITY AND AVOIDANT BEHAVIOR IN THE FAMILY

Subjective risk perception, perceived impact of Huntington's disease ( HD), perceived benefits and barriers of predictive testing and persona lity characteristics of persons withdrawing from the predictive test p rogramme for HD and of siblings of test applicants were studied in a m ailed survey. The belief that important decisions do not need to depen d on a test result and the anticipated risk perception, perceived impa ct of Huntington's disease (HD), inability to cope with a bad result p layed an important role in the decision not to be tested. Nevertheless half of the group who ever considered testing, still planned to under go a test in the future. A comparison of tested and untested persons r evealed that the first group is more likely to overestimate the risk t han the second group, but that both groups did not significantly diffe r from each other regarding anxiety, ego strength and coping strategie s. An intrafamilial analysis of tested and untested siblings confirmed these findings. The problems during data collection and the reasons f or the dropout are an illustration of the avoidant behaviour regarding HD and the predictive test in many individuals and families.