The motivation of at‐risk individuals and their partners in deciding for or against predictive testing for Huntington's disease
作者:
G. Evers‐Kiebooms,
A. Swerts,
J. J. Cassiman,
H. Van Den Berghe,
期刊:
Clinical Genetics
(WILEY Available online 1989)
卷期:
Volume 35,
issue 1
页码: 29-40
ISSN:0009-9163
年代: 1989
DOI:10.1111/j.1399-0004.1989.tb02902.x
出版商: Blackwell Publishing Ltd
关键词: decision making;heterozygote detection;Huntington chorea;predictive testing;psychology
数据来源: WILEY
摘要:
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
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