Attitudes of German persons at risk for Huntington's disease toward predictive and prenatal testing

Huntington's disease is an autosomal dominant neurodegenerative disorder characterized by involuntary movements, psychological deterioration and dementia. Indirect predictive testing by linkage analysis has been possible since 1983; direct predictive testing by detecting the instable CAG-repeat has been possible since 1993. Persons at risk were asked, by questionnaire, about their motivation and regarding attitude taking part in indirect and direct predictive and prenatal diagnostics. About half of the interrogated German persons at risk wish to undertake DNA analysis, whereas 32.7% do not want to take part in a direct predictive test. Motives for taking the test are the same as those mentioned in the literature (certainty of carrier status, decisions concerning marriage and further children, planning a career). Motives for not taking the test mostly involve psychological problems in coping with the test result. 45.7% wish to undergo a direct prenatal test (main cause: certainty of the gene status of the child), whereas 27% would not take this test (because of non-toleration of abortion). Only statistical trends could be seen between the intention to take the predictive or prenatal test and some social and demographic variables. The at-risk persons would not change their attitudes regarding indirect or direct predictive and prenatal DNA analysis; they seem to have a confirmed opinion about molecular genetics, mostly depending on familial and social background.