Attitudes of neurologists, psychiatrists, and psychotherapists towards predictive testing for Huntington's disease in Germany.
- 1 December 1993
- journal article
- Published by BMJ in Journal of Medical Genetics
- Vol. 30 (12) , 1023-1027
- https://doi.org/10.1136/jmg.30.12.1023
Abstract
Predictive testing for Huntington's disease (HD) in Germany is performed by genetic counsellors, neurologists, psychiatrists, and psychotherapists. In order to evaluate the attitudes of neurologists, psychiatrists, and psychotherapists in Germany towards predictive testing for HD, a postal questionnaire was sent to this group. Two German Bundesländer were chosen, Baden Württemberg (BW) and Niedersachsen (NS). Of 469 persons interviewed the response rate was 32.6%. The questionnaire consisted of 17 items assessing sociodemographic data, acquaintance with HD patients, lay organisations, attitudes towards genetic counselling, presymptomatic and prenatal DNA testing, and reproduction of persons at risk for HD. More than 70% of the subjects were well informed about predictive DNA testing but knowledge about the details of the test procedure, especially the World Federation of Neurology (WFN) and International Huntington Association (IHA)1 recommendations, was quite low (11.8%). Nevertheless, the majority would recommend predictive testing for HD although they anticipated problems for the probands. The majority of our respondents favoured psychological test and post-test counselling for those tested. Concerning reproduction, most subjects favoured prenatal testing or that persons at risk should refrain from having children. We found that the opinions of practitioners and at risk persons differed with respect to the predictive DNA test and, particularly, to prenatal testing. Therefore the testing procedure could be improved if practitioners were better informed about the DNA test in general and about the attitudes and wishes of their patients.Keywords
This publication has 19 references indexed in Scilit:
- Presymptomatic DNA‐testing for Huntington disease: Pretest attitudes and expectations of applicants and their partners in the Dutch programAmerican Journal of Medical Genetics, 1993
- Presymptomatic Testing for Huntington's Disease in Wales 1987–90The British Journal of Psychiatry, 1992
- DNA‐Testing for Huntington's disease in The Netherlands: A retrospective study on psychosocial effectsAmerican Journal of Medical Genetics, 1992
- Predictive testing for Huntington disease in Canada: Adverse effects and unexpected results in those receiving a decreased riskAmerican Journal of Medical Genetics, 1992
- Understanding the decision to take the predictive test for Huntington diseaseAmerican Journal of Medical Genetics, 1991
- Predictive testing for Huntington disease: II. Demographic characteristics, life‐style patterns, attitudes, and psychosocial assessments of the first fifty‐one test candidatesAmerican Journal of Medical Genetics, 1989
- Attitudes toward presymptomatic testing in Huntington diseaseAmerican Journal of Medical Genetics, 1987
- At‐risk Persons' attitudes toward presymptomatic and prenatal testing of Huntington disease in MichiganAmerican Journal of Medical Genetics, 1987
- Intended use of predictive testing by those at risk for Huntington diseaseAmerican Journal of Medical Genetics, 1987
- Attitudes of persons at risk for Huntington disease toward predictive testingAmerican Journal of Medical Genetics, 1987