To know or not to know: A review of behaviour and suicidal ideation in preclinical Huntington's disease

Robins Wahlin, Tarja-Brita (2007) To know or not to know: A review of behaviour and suicidal ideation in preclinical Huntington's disease. Patient Education and Counseling, 65 3: 279-287. doi:10.1016/j.pec.2006.08.009


Author Robins Wahlin, Tarja-Brita
Title To know or not to know: A review of behaviour and suicidal ideation in preclinical Huntington's disease
Journal name Patient Education and Counseling   Check publisher's open access policy
ISSN 0738-3991
1873-5134
Publication date 2007-03
Sub-type Critical review of research, literature review, critical commentary
DOI 10.1016/j.pec.2006.08.009
Volume 65
Issue 3
Start page 279
End page 287
Total pages 9
Place of publication Princeton, N.Y., U.S.A.
Publisher Elsevier
Language eng
Subject 1117 Public Health and Health Services
Formatted abstract
Objective
At present, the problems associated with suicidal ideation and suicide in Huntington's disease (HD), worldwide, are much the same as 2 decades ago. This study seeks to investigate the psychological complications of predictive testing in HD at risk populations.

Methods
The key problems of predictive testing, fear of acquiring carrier status, psychological consequences, autonomy, and rights to know are discussed.

Results
This review (1) describes psychological affect and problems of persons facing the decision to test for HD, (2) discusses suicidal ideation, behaviour, and catastrophic events associated with predictive testing, (3) assesses ethical questions raised in the genetic counselling, (4) questions whether counsellors should promote or advocate predictive testing, and finally (5) discusses what professionalism actually is in genetic counselling.

Conclusion
The need for professional counselling, using a well designed protocol, and the importance of focusing on the suicide risk of participants in predictive testing programs are emphasized.

Practice implications
The counsellor has an obligation to provide adequate information. The professionals should not promote nor advocate presymptomatic DNA-testing. Depression, hopelessness, anxiety, emotional distress, suicidal tendencies, and social dysfunction grading should be considered in predictive testing of HD.
© 2006 Elsevier Ireland Ltd. All rights reserved.

Keyword Huntington's disease
Predictive testing
Suicidal behaviour and ideation
Q-Index Code C1
Q-Index Status Provisional Code
Institutional Status Non-UQ

Document type: Journal Article
Sub-type: Critical review of research, literature review, critical commentary
Collections: Excellence in Research Australia (ERA) - Collection
School of Medicine Publications
 
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Citation counts: TR Web of Science Citation Count  Cited 26 times in Thomson Reuters Web of Science Article | Citations
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Created: Tue, 19 Jan 2010, 16:21:38 EST by Gerald Martin on behalf of Faculty Of Health Sciences