Teltscher B, Polgar S
J Med Genet. 1981 Feb;18(1):31-9. doi: 10.1136/jmg.18.1.31.
The task of genetic counselling of people at risk for Huntington's disease might be facilitated by increased knowledge of relevant population characteristics. The aim of the present study was to clarify select socioeconomic characteristics, knowledge concerning the disease, and attitudes towards predictive tests of people at 50% risk of inheriting Huntington's disease in the state of Victoria. A random sample of subjects was drawn from the Huntington's disease register and 50 questionnaires were analysed. Respondents completed three questionnaires which covered their socioeconomic characteristics, the extent and accuracy of their knowledge about the genetic, progress, and treatment of Huntington's disease, and their attitude and acceptance of predictive tests as well as their intentions about future reproduction. A very positive attitude was found to be held by the respondents towards a predictive test if it was safe, reliable, and non-invasive. Resultant problems which would arise, should a reliable test be found, are discussed. The respondent's knowledge concerning the disease was found to be adequate generally.
对亨廷顿舞蹈症高危人群进行遗传咨询的任务,可能会因对相关人群特征的更多了解而变得更容易。本研究的目的是阐明维多利亚州有50%遗传亨廷顿舞蹈症风险人群的特定社会经济特征、对该疾病的了解情况以及对预测性检测的态度。从亨廷顿舞蹈症登记册中抽取了一个随机样本,并对50份问卷进行了分析。受访者填写了三份问卷,内容涵盖他们的社会经济特征、对亨廷顿舞蹈症的遗传、病程和治疗的了解程度及准确性、他们对预测性检测的态度和接受程度以及他们对未来生育的打算。如果预测性检测安全、可靠且非侵入性,受访者对其持非常积极的态度。讨论了如果找到可靠检测可能会出现的相关问题。发现受访者对该疾病的了解总体上是足够的。