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

Sato ASHIDA; Laura M KOEHLY; J Scott Roberts; Clara A CHEN; Susan HIRAKI; Robert C GREEN

doi:10.1080/10810730903295518

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

Journal article

Open access

Peer reviewed

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

Sato ASHIDA, Laura M KOEHLY, J Scott Roberts, Clara A CHEN, Susan HIRAKI and Robert C GREEN

Journal of health communication, Vol.14(8), pp.768-784

2009

DOI: 10.1080/10810730903295518

PMCID: PMC2801901

PMID: 20029710

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https://www.ncbi.nlm.nih.gov/pmc/articles/2801901View

Open Access

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.

Medical Genetics

General aspects. Genetic counseling

Public health. Hygiene-occupational medicine

Public health. Hygiene

Miscellaneous

Prevention and actions

Biological and medical sciences

Medical sciences

Details

Title: Subtitle: Disclosing the Disclosure: Factors Associated With Communicating the Results of Genetic Susceptibility Testing for Alzheimer's Disease
Creators: Sato ASHIDA - Social and Behavioral Research Branch, National Human Genome Research Institute, Bethesda, Maryland, United States
Laura M KOEHLY - Social and Behavioral Research Branch, National Human Genome Research Institute, Bethesda, Maryland, United States
J Scott Roberts - Department of Health Behavior & Health Education, University of Michigan School of Public Health, Ann Arbor, Michigan, United States
Clara A CHEN - Data Coordinating Center, Boston University School of Public Health, Boston, Massachusetts, United States
Susan HIRAKI - Department of Neurology, Boston University School of Medicine, Boston, Massachusetts, United States
Robert C GREEN - Departments of Neurology, Medicine (Genetics), and Epidemiology, Boston University Schools of Medicine and Public Health, Boston, Massachusetts, United States
Resource Type: Journal article
Publication Details: Journal of health communication, Vol.14(8), pp.768-784
DOI: 10.1080/10810730903295518
PMID: 20029710
PMCID: PMC2801901
NLM abbreviation: J Health Commun
ISSN: 1081-0730
eISSN: 1087-0415
Publisher: Taylor & Francis; Philadelphia, PA
Language: English
Date published: 2009
Academic Unit: Injury Prevention Research Center; Public Policy Center (Archive); Community and Behavioral Health
Record Identifier: 9984063206202771

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