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To know or not to know: an update of the literature on the psychological and behavioral impact of genetic testing for Alzheimer disease risk

Citation

Rahman, B and Meiser, B and Sachdev, P and Barlow-Stewart, K and Otlowski, M and Zilliacus, E and Schofield, P, To know or not to know: an update of the literature on the psychological and behavioral impact of genetic testing for Alzheimer disease risk, Genetic Testing and Molecular Biomarkers, 16, (8) pp. 935-942. ISSN 1945-0265 (2012) [Refereed Article]


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Copyright Statement

Copyright 2012 Mary Ann Liebert, Inc.

DOI: doi:10.1089/gtmb.2011.0300

Abstract

Alzheimer disease (AD) is a genetically heterogenous disorder; in rare cases autosomal dominantly inherited mutations typically cause early-onset familial AD (EOAD), whereas the risk for late-onset AD (LOAD) is generally modulated by genetic variants with relatively low penetrance but high prevalence, with variants in apolipoprotein E (APOE) being a firmly established risk factor. This article presents an overview of the current literature on the psychological and behavioral impact of genetic testing for AD. The few studies available for presymptomatic testing for EOAD showed that only a very small proportion of individuals had poor psychological outcomes as a result. Initial interest in testing for EOAD decreases significantly after identification of a specific mutation in a kindred, suggesting that interest and potential for knowledge may not translate into actual testing uptake. The majority of individuals from both the general population and those with a family history of AD had positive attitudes towards, and were interested in, susceptibility testing for APOE. Motivations for genetic testing included to provide information for future planning and to learn about one's own and one's children's risks of developing AD. Although susceptibility testing for APOE genotype is not currently recommended due to the lack of clinical utility, this review demonstrates that there is interest in testing and no obvious adverse psychological effects to those who have been tested.

Item Details

Item Type:Refereed Article
Keywords:Alzheimer disease, apolipoprotein E, article, gene mutation, genetic risk, genetic screening, genetic susceptibility, health behavior, human, onset age, psychologic assessment
Research Division:Law and Legal Studies
Research Group:Public law
Research Field:Public law not elsewhere classified
Objective Division:Law, Politics and Community Services
Objective Group:Justice and the law
Objective Field:Justice and the law not elsewhere classified
UTAS Author:Otlowski, M (Professor Margaret Otlowski)
ID Code:81829
Year Published:2012
Web of Science® Times Cited:18
Deposited By:Law
Deposited On:2013-01-09
Last Modified:2017-11-06
Downloads:519 View Download Statistics

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