Using Alzheimer's disease as a model for genetic risk disclosure: implications for personal genomics
Article first published online: 18 JUL 2011
© 2011 John Wiley & Sons A/S
Volume 80, Issue 5, pages 407–414, November 2011
How to Cite
Roberts, J., Christensen, K. and Green, R. (2011), Using Alzheimer's disease as a model for genetic risk disclosure: implications for personal genomics. Clinical Genetics, 80: 407–414. doi: 10.1111/j.1399-0004.2011.01739.x
- Issue published online: 5 OCT 2011
- Article first published online: 18 JUL 2011
- Accepted manuscript online: 23 JUN 2011 04:48AM EST
- Received 13 April 2011, revised and accepted for publication 20 June 2011
- Alzheimer disease;
- genetic testing;
- risk communication
Roberts JS, Christensen KD, Green RC. Using Alzheimer's disease as a model for genetic risk disclosure: implications for personal genomics.
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.