183576 Do research participants share the results of genetic susceptibility testing for Alzheimer's disease with family, friends, and health professionals? Insights from the REVEAL Study

Wednesday, October 29, 2008: 9:18 AM

Sato Ashida, PhD , Social and Behavioral Research Branch, National Human Genome Research Institute/NIH, Bethesda, MD
Laura M. Koehly, PhD , Social and Behavioral Research Branch, National Human Genome Research Institute/NIH, Bethesda, MD
J. Scott Roberts, PhD , Department of Health Behavior & Health Education, University of Michigan School of Public Health, Ann Arbor, MI
Clara A. Chen, MHS , Data Coordinating Center, Boston University School of Public Health, Boston, MA
Susan Hiraki, MS , Department of Neurology, Boston University School of Medicine, Boston, MA
Robert C. Green, MD, MPH , Schools of Medicine and Public Health, Boston University, Boston, MA
Genetic information is increasingly being utilized to determine individuals' risk for various diseases. While prior research has examined communication of genetic test results and the psychological implications of results sharing among individuals affected by rare, single-gene disorders (e.g., cancer syndromes), there is a dearth of literature examining such phenomena concerning less penetrant genes associated with common disease. Understanding how this type of genetic susceptibility information is communicated is critical in translating research advances in genomics into future public health practices.

275 first-degree relatives of Alzheimer's disease (AD) patients in a randomized trial received results of genetic (APOE-e4) susceptibility testing for AD and reported their communication behaviors 6 weeks after the disclosure. Sociodemographic characteristics and beliefs about AD hypothesized to be associated with communication behavior were measured at baseline. Levels of psychological adjustment were measured 12 months after results disclosure.

Preliminary results showed that participants were most likely to share their results with family (64%), followed by spouse (51%), friends (35%), and health professionals (12%). Higher perceived benefits of genetic testing was associated with higher likelihood of communication to family. Optimism that a cure/treatment for AD would be developed was associated with higher likelihood of communication to spouse, friends, and health professionals. Furthermore, communicating the test results to friends and health professionals was associated with a significant decrease in Beck Anxiety Inventory scores at 12-months. This finding suggests possible benefits of results sharing on psychological adjustment after genetic susceptibility testing. Implications of findings for public health practice will be discussed.

Learning Objectives:
At the end of the session, participants will be able to: 1.Discuss the extent to which genetic susceptibility testing results for Alzheimer’s disease are communicated to others by test recipients. 2.Identify the factors associated with communication of genetic susceptibility testing results. 3.Discuss possible ways to facilitate long-term psychological adjustment among the recipients of genetic susceptibility testing.

Keywords: Genetics, Communication

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I developed the research question and conducted data analyses presented in this abstract.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.