title: Parents' preferences for return of results in pediatric genomic research.
abstract: BACKGROUND
  The aim of this study was to ascertain parental preferences for the return of genetic research results on themselves and their children and their choices for genetic research results to receive.
  
  
  METHODS
  A mail survey was sent to 6,874 families seen at Boston Children's Hospital. The survey included questions assessing the respondents' preferences regarding the types of result they wanted to receive on themselves and their children.
  
  
  RESULTS
  Most of the 1,060 respondents 'probably' or 'definitely' wanted to receive genetic research results about themselves (84.6%) and their children (88.0%). Among those who wanted to receive results, 83.4% wanted to receive all research results for themselves and 87.8% for their children. When questions about specific types of research results were combined into a composite measure, fewer respondents chose to receive all results for themselves (53.5%) and for their children (56.9%).
  
  
  CONCLUSIONS
  Although most parents report a desire to receive all research results on a general question, almost half chose to receive only a subset of research results when presented with specific types of research results. Our findings suggest that participants might not understand the implications of their choice of individual research results to receive unless faced with specific types of results.
authors.affiliation: Center for Patient Safety and Quality Research in the Program for Patient Safety and Quality, Boston Children's Hospital, Boston, Mass., USA.
authors.forename: S I
authors.initials: SI
authors.lastname: Ziniel
authors.forename: S K
authors.initials: SK
authors.lastname: Savage
authors.forename: N
authors.initials: N
authors.lastname: Huntington
authors.forename: J
authors.initials: J
authors.lastname: Amatruda
authors.forename: R C
authors.initials: RC
authors.lastname: Green
authors.forename: E R
authors.initials: ER
authors.lastname: Weitzman
authors.forename: P
authors.initials: P
authors.lastname: Taylor
authors.forename: I A
authors.initials: IA
authors.lastname: Holm
mesh_terms: D000328:Adult; D001900:Boston; D002648:Child; D032882:Comprehension; D003625:Data Collection; D005260:Female; D036281:Genetic Research; D005820:Genetic Testing; D015894:Genome, Human / Q000235:genetics; D023281:Genomics; D006266:Health Education / Q000379:methods*; D006776:Hospitals, Pediatric; D006801:Humans; D008297:Male; D008875:Middle Aged; D009042:Motivation; D010290:Parents / Q000523:psychology*; D055815:Young Adult