Using Alzheimer's disease as a model for genetic r... [Clin Genet. 2011] - PubMed result

Using Alzheimer's disease as a model for genetic r... [Clin Genet. 2011] - PubMed result: "Clin Genet. 2011 Jun 23. doi: 10.1111/j.1399-0004.2011.01739.x. [Epub ahead of print]
Using Alzheimer's disease as a model for genetic risk disclosure: Implications for personal genomics.
Roberts JS, Christensen KD, Green RC.
Source

Department of Health Behavior and Health Education, University of Michigan School of Public Health, Ann Arbor, MI, USA Division of Genetics, Department of Medicine, Brigham and Women's Hospital and Harvard Medical School, Boston, MA, USA.


Abstract

Susceptibility testing for common, complex adult-onset diseases is projected to become more commonplace as the rapid pace of genomic discoveries continues, and evidence regarding the potential benefits and harms of such testing is needed to inform medical practice and health policy. Apolipoprotein E (APOE) testing for risk of Alzheimer's disease (AD) provides a paradigm in which to examine the process and impact of disclosing genetic susceptibility for a prevalent, severe and incurable neurological condition. This review summarizes findings from a series of multi-site randomized clinical trials examining psychological and behavioral responses to various methods of genetic risk assessment for AD using APOE disclosure. We discuss challenges involved in disease risk estimation and communication and the extent to which participants comprehend and perceive utility in their genetic risk information. Findings on the psychological impact of test results are presented (e.g., distress), along with data on participants' health behavior and insurance purchasing responses (e.g., long term care). Finally, we report comparisons of the safety and efficacy of intensive genetic counseling approaches to briefer models that emphasize streamlined processes and educational materials. The implications of these findings for the emerging field of personal genomics are discussed, with directions identified for future research.

© 2011 John Wiley & Sons A/S.

PMID:
21696382
[PubMed - as supplied by publisher]

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