Parent perspectives on pediatric genetic research and implications for genotype-driven research recruitment.
As genetic research is increasingly conducted in children, it is important to understand how parents make decisions about enrolling their children and what they think about receiving their children's genetic research results. We conducted semi-structured phone interviews with 23 parents of children enrolled in genetic studies of autism or diabetes. Qualitative thematic analysis focused on two important components of genetic research and genotype-driven recruitment: participation in genetic research and return of results. Our findings suggest that parents' preferences and perspectives may be specific to their child's disease and the needs of the family as a whole. Assessing the expectations of target research populations will be beneficial for developing best practices for pediatric genetic research, return of results, and genotype-driven recruitment.
Seattle Children's Research Institute University of Washington, Treuman Katz Center for Pediatric Bioethics, 1900 Ninth Ave., Seattle, WA 98101, USA. holly.tabor@seattlechildrens.org
Holly K
HK
Tabor
Tracy
T
Brazg
Julia
J
Crouch
Emily E
EE
Namey
Stephanie M
SM
Fullerton
Laura M
LM
Beskow
Benjamin S
BS
Wilfond
D000328:Adult; D001290:Attitude; D002648:Child; D030881:Disclosure / Q000941:ethics*; D005260:Female; D036281:Genetic Research / Q000941:ethics*; D005838:Genotype; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D010290:Parents; D018579:Patient Selection / Q000941:ethics*; D036301:Qualitative Research; D035842:Research Subjects