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亨廷顿舞蹈症高危个体及其伴侣决定是否进行预测性检测的动机。

The motivation of at-risk individuals and their partners in deciding for or against predictive testing for Huntington's disease.

作者信息

Evers-Kiebooms G, Swerts A, Cassiman J J, Van den Berghe H

机构信息

Center for Human Genetics, K. U. Leuven, Belgium.

出版信息

Clin Genet. 1989 Jan;35(1):29-40. doi: 10.1111/j.1399-0004.1989.tb02902.x.

Abstract

Sixty-six percent of the at-risk persons and 74% of the partners in a large survey in Belgium have the intention of making use of predictive testing for Huntington's disease. One third of them, however, have expressed the intention of postponing the final decision for various reasons. The intention to be tested is not at all related to sociodemographic characteristics. A thorough exploration of the reasons for being in favour of or against taking the test reveals that the motivation inspiring this very personal decision is very complex. In the group of at-risk persons, less than half of the variation in the intention to be tested is explained by the role of a series of specific reasons as predictor variables in a regression analysis. The proportion of explained variation is slightly higher in the group of partners. 'To have certainty about my own future' and 'to make arrangements for the future' play a major part in the decision of the total group. 'Making decisions concerning children' and to a larger extent 'informing children about their risk status' are important factors in deciding in favour of the test.

摘要

在比利时的一项大型调查中,66%的高危人群和74%的伴侣有意进行亨廷顿舞蹈症的预测性检测。然而,其中三分之一的人表示,由于各种原因,他们打算推迟做出最终决定。是否进行检测的意愿与社会人口统计学特征毫无关系。对支持或反对检测的原因进行深入探究后发现,促使这一非常个人化决定的动机非常复杂。在高危人群组中,在回归分析中,作为预测变量的一系列具体原因所起的作用,只能解释不到一半的检测意愿差异。在伴侣组中,可解释的差异比例略高一些。“确定自己的未来”和“为未来做好安排”在整个群体的决定中起主要作用。“做出关于子女的决定”以及在更大程度上“告知子女他们的风险状况”是决定支持检测的重要因素。

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