Disclosing the Disclosure: Factors Associated With Communicating the Results of Genetic Susceptibility Testing for Alzheimer's Disease

Abstract

This study explored the extent to which recipients of genetic susceptibility testing for Alzheimer's disease (AD) communicated their results to others. It also examined demographic characteristics, along with beliefs about AD, associated with such communication. Participants (N = 271) in a randomized clinical trial involving genetic testing for Apolipoprotein E (APOE) gene variants among first-degree relatives of AD patients reported their communication behaviors 6 weeks after the results disclosure. Information on beliefs about AD and genetic testing was collected at baseline. Eighty-two percent of participants receiving APOE genotype information shared their results with someone. Specifically, 64% shared with family members, 51% with spouse or significant others, 35% with friends, and 12% with health care professionals. Greater AD treatment optimism was associated with communicating results to family (OR = 1.43), spouse (OR = 1.62), friends (OR = 1.81), and health care professionals (OR = 2.20). Lower perceived risk (OR = 0.98) and higher perceived importance of genetics in the development of AD (OR = 1.93) were associated with results communication in general. Lower perceived drawbacks of AD genetic testing was associated with results communication to friends (OR = 0.65). Beliefs about AD risks and causes, genetic testing, and development of treatments partly may determine the interpersonal communication patterns of genetic susceptibility test results.

Keywords:

• Alzheimer's disease
• APOE communication
• disclosure
• susceptibility genetic testing

The REVEAL Study is funded by the ELSI Branch of the National Human Genome Research Institute and the National Institute on Aging (R01 HG/AG02213 and R01 AG09029). Additional support was provided by an NIA Mentoring Award to Dr. Green (K24 AG027841), the Boston University Alzheimer's Disease Center (P30 AG13846), and Boston University General Clinical Research Center (GCRC; M01 RR00533). The completion of this article was supported by the Intramural Research Program of the National Human Genome Research Institute at the National Institutes of Health.

Notes

Note: Three benefit items and one drawback item from the original scales were excluded because the results of factor analysis indicated that they had factor loadings that were lower than a predetermined level (0.40).

∗p < .05, ∗∗p < .01, ∗∗∗p < .001.

(1) Each column represents an individual model for each outcome. (2) A horizontal line below “Condensed disclosure” indicates the distinction between covariates (above the line) and AD-belief variables (below the line). (3) AD-belief variables that were not significant in any of the models are not presented in this table. (4) NS indicates that indicated AD-belief variable was not significant in the relevant model, and thus was not included in the final model.

Other REVEAL investigators include the following: Lindsay A. Farrer, PhD, Department of Neurology and Medicine (Genetics Program), Boston University School of Medicine and Biostatistics, Boston University School of Public Health; Robert Stern, PhD, Department of Neurology, Boston University School of Medicine; L. Adrienne Cupples, PhD, Department of Epidemiology and Biostatistics, Boston University School of Public Health; Anil Nair, MD, Department of Neurology, Boston University School of Medicine; Erin Linnenbringer, MS, CGC, Department of Health Behavior and Health Education, University of Michigan School of Public Health; Thomas Obisesan, MD, MPH, Department of Medicine, Howard University Hospital, Washington, DC; Grace-Ann Fasaye, ScM, CGC, Department of Medicine, Howard University Hospital, Washington, DC; Charmaine Royal, PhD, National Human Genome Center, Howard University, Washington, DC; Melissa Barber, ScM, Memory & Aging Center, Case Western Reserve University/University Hospitals of Cleveland Memory & Aging, Cleveland, OH; Peter Whitehouse, MD, Memory & Aging Center, Case Western Reserve University/University Hospitals of Cleveland Memory & Aging, Cleveland, OH; Normal Relkin, MD, PhD, Department of Neurology, Weill Medical College of Cornell University, New York, NY; Elana Cox, MS, CGC, Department of Neurology, Weill Medical College of Cornell University, New York, NY; Lisa Ravdin, PhD, Department of Neurology and Neuroscience, Weill Medical College of Cornell University, New York, NY.

The views expressed in this article are those of the authors and do not necessarily reflect the official policy or position of the Department of Health and Human Services, nor the U.S. Government.