We studied the psychological impact and psychosocial consequences of direct presymptomatic testing for @entity2033 in Norway. We interviewed 30 out of a total of 43 @entity1 at risk for @entity2033 who had been tested one to three years earlier, and had been through the test program, and 19 of their spouses. We also included 16 @entity1 at risk who had decided not to take the test. 22 @entity1 were non-carriers, and seven carriers. One had decided not to know the answer so far. 13 out of 30 answered that the risk of getting @entity2033 had influenced choices they had made in their lives, but quite a few did not know that they were at risk before they had grown up. Six couples out of 21 had divorced after the test; only three said it happened because of the test result. The main problem for many of the @entity1 who now know they are non-carriers is that siblings already are sick or know they will get the disease. 15 @entity1 (50%) experienced the need for some kind of psychiatric treatment during the pre-test period, during the test procedure, or after the test. Eight @entity1 said they had wanted a closer follow-up after the test; most of them had got a negative answer. In this study most of those at risk had adapted reasonably well to the test results. Only seven @entity1 out of 30 were found to be carriers in our study. We therefore have reason to believe that among the 13 tested @entity1 who declined to be involved in the study, the majority had been identified as carriers. Our findings may lend support to a hypothesis suggesting two kinds of response to being identified as carrier. According to studies of @entity1005 , one group adjusts reasonably well. The other group responds by avoiding follow-up contact with professional teams, which suggests more @entity158 and distress.

[Psychosocial consequences of presymptomatic genetic testing. A retrospective study of testing for XXXX ].

@entity1 :: ('9606', 'Species') :: ['persons'] @entity158 :: ('MESH:D010146', 'Disease') :: ['psychosocial pain'] @entity2033 :: ('MESH:D006816', 'Disease') :: ["Huntington's disease"] @entity1005 :: ('MESH:D013313', 'Disease') :: ['post-traumatic stress disorders']
@entity2033 :: (MESH:D006816,Disease) :: ['Huntington disease']
