title: Genetic susceptibility for Alzheimer's disease: why did adult offspring seek testing?
abstract: This study explored why adult offspring of individuals with Alzheimer's disease (AD) sought genetic susceptibility testing for AD. Participants (N = 60) were a subset of subjects from the first randomized controlled clinical trial to offer such testing. Qualitative analysis revealed two central constructs: altruism and learning. Planning for the future, hoping to prevent AD, and need to know were concepts that explained the value of learning. These results add important contextual information into why people might seek information on their genetic risk for a severe neurodegenerative disease for which there are, as yet, no preventative treatments. As genetic susceptibility testing for numerous other diseases enters clinical medicine, these findings can enhance the knowledge and sensitivity of researchers and clinicians when they are asked by participants or patients whether they should be tested.
authors.affiliation: Brigham and Women's Hospital, Center for Excellence in Nursing Practice, and School of Nursing, Bouvé College of Health Sciences, Northeastern University, Boston, Massachusetts, USA.
authors.forename: Ann C
authors.initials: AC
authors.lastname: Hurley
authors.forename: Faan Rose
authors.initials: FR
authors.lastname: Harvey
authors.forename: J Scott
authors.initials: JS
authors.lastname: Roberts
authors.forename: Chantel
authors.initials: C
authors.lastname: Wilson-Chase
authors.forename: Stephanie
authors.initials: S
authors.lastname: Lloyd
authors.forename: Janalyn
authors.initials: J
authors.lastname: Prest
authors.forename: Margaret
authors.initials: M
authors.lastname: Lock
authors.forename: Kathy J
authors.initials: KJ
authors.lastname: Horvath
authors.forename: Robert C
authors.initials: RC
authors.lastname: Green
mesh_terms: D000328:Adult; D032721:Adult Children / Q000523:psychology*; D000368:Aged; D000533:Altruism; D000544:Alzheimer Disease / Q000235:genetics*; D005260:Female; D020022:Genetic Predisposition to Disease; D005820:Genetic Testing; D006801:Humans; D007407:Interviews as Topic; D007858:Learning; D008297:Male; D008875:Middle Aged; D009042:Motivation