title: 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.
authors.affiliation: Social and Behavioral Research Branch, National Human Genome Research Institute, Bethesda, Maryland 20892-2073, USA. ashidas@mail.nih.gov
authors.forename: Sato
authors.initials: S
authors.lastname: Ashida
authors.forename: Laura M
authors.initials: LM
authors.lastname: Koehly
authors.forename: J Scott
authors.initials: JS
authors.lastname: Roberts
authors.forename: Clara A
authors.initials: CA
authors.lastname: Chen
authors.forename: Susan
authors.initials: S
authors.lastname: Hiraki
authors.forename: Robert C
authors.initials: RC
authors.lastname: Green
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D000544:Alzheimer Disease / Q000235:genetics* / Q000523:psychology*; D001057:Apolipoproteins E / Q000235:genetics; D005260:Female; D020022:Genetic Predisposition to Disease; D005820:Genetic Testing / Q000523:psychology*; D006801:Humans; D008297:Male; D008875:Middle Aged; D012650:Self Disclosure
chemical_list: D001057:Apolipoproteins E