ON ATTITUDES AND APPRECIATION 6 MONTHS AFTER PREDICTIVE DNA TESTING FOR HUNTINGTON DISEASE IN THE DUTCH PROGRAM

We have studied the 6-month follow-up attitudes of 63 individuals, aft er predictive testing for Huntington disease (HD). Reducing uncertaint y (81%) and family planning (60%) were the major reasons for taking th e test. Twenty-four individuals were diagnosed as having an increased risk (+/- 98%), and 39 a decreased risk (+/- 2%). Among those with an increased risk, denial or minimization of the ultimate impact of the i ncreased risk result was observed. Most of them (84%) rated their curr ent life situation, at the very least, as being good. Twenty-one perce nt of individuals with an increased risk who originally planned to hav e a family, decided to refrain from having children. Sixty percent of those with increased risk who still wished to have children, would cho ose to have prenatal testing. In most individuals with increased risk, the test result did not increase the previously expected control over their own future. Half of the partners of persons with increased risk acknowledged the burden of the future disease. Half had no one in who m they could confide. They showed loyalty to the denial and avoidance reactions of their spouses. Half of the individuals with decreased ris k denied the impact of the result, as reflected by absence of relief, and emotional numbness. A third of persons with decreased risk experie nced involvement with problems of affected relatives. We found that 20 % of all participants were discontented with the support given by thei r general practitioner, who is normally regarded as being the most sig nificant professional for aftercare. Our findings suggest that the per petuation of psychological defenses, which may temporarily be adequate , may ultimately prevent an individual from taking advantage of being informed. These questions should be further addressed in long-term fol low-up studies. (C) 1993 Wiley-Liss, Inc.