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Title: Non-participation in predictive testing for Huntington's disease: Individual decision-making, personality and avoidant behaviour in the family
Authors: Decruyenaere, Marleen
Evers-Kiebooms, Gerry ×
Boogaerts, Andrea
Cloostermans, Trees
Cassiman, Jean-Jacques
Demyttenaere, Koen
Dom, René
Fryns, Jean-Pierre
Van den Berghe, Herman #
Issue Date: Nov-1997
Publisher: Nature Publishing Group
Series Title: European Journal of Human Genetics vol:5 issue:6 pages:351-363
Abstract: Subjective risk perception, perceived impact of Huntington's disease (HD), perceived benefits and barriers of predictive testing and personality characteristics of persons withdrawing from the predictive test programme for HD and of siblings of test applicants were studied in a mailed survey. The belief that important decisions do not need to depend on a test result and the anticipated risk perception, perceived impact of Huntington's disease (HD), inability to cope with a bad result played an important role in the decision not to be tested. Nevertheless half of the group who ever considered testing, still planned to undergo a test in the future. A comparison of tested and untested persons revealed that the first group is more likely to overestimate the risk than the second group, but that both groups did not significantly differ from each other regarding anxiety, ego strength and coping strategies. An intrafamilial analysis of tested and untested siblings confirmed these findings. The problems during data collection and the reasons for the dropout are an illustration of the avoidant behaviour regarding HD and the predictive test in many individuals and families.
ISSN: 1018-4813
Publication status: published
KU Leuven publication type: IT
Appears in Collections:Clinical Genetics Section (-)
Research Group Psychiatry (-)
Human Mutations and Polymorphisms Section (-)
Health Psychology
Department of Human Genetics - miscellaneous
Forensic Biomedical Sciences
Field of Study Social and Community Work Odisee
× corresponding author
# (joint) last author

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