The development of a preference-setting model for the return of individual genomic research results.
Understanding participants' preferences for the return of individual research results (IRR) in genomic research may allow for the implementation of more beneficial result disclosure methods. We tested four preference-setting models through cognitive interviews of parents to explore how parents conceptualize the process of setting preferences and which disease characteristics they believe to be most important when deciding what results to receive on their child. Severity and preventability of a condition were highly influential in decision making and certain groups of research results were anticipated by participants to have negative psychological effects. These findings informed the development of an educational tool and preference-setting model that can be scaled for use in the return of IRR from large biobank studies.
Johns Hopkins University School of Medicine, Baltimore, MD, USA.
Phoebe L
PL
Bacon
Northeastern University, Boston, MA, USA.
Erin D
ED
Harris
Harvard Medical School, Boston, MA, USA Boston Children's Hospital, MA, USA.
Sonja I
SI
Ziniel
Boston Children's Hospital, MA, USA.
Sarah K
SK
Savage
Harvard Medical School, Boston, MA, USA Boston Children's Hospital, MA, USA.
Elissa R
ER
Weitzman
Harvard Medical School, Boston, MA, USA Partners Personalized Medicine, Boston, MA, USA.
Robert C
RC
Green
Harvard Medical School, Boston, MA, USA Boston Children's Hospital, MA, USA.
Noelle L
NL
Huntington
Harvard Medical School, Boston, MA, USA Boston Children's Hospital, MA, USA ingrid.holm@childrens.harvard.edu.
Ingrid A
IA
Holm
D000328:Adult; D001007:Anxiety; D018070:Biological Specimen Banks; D002648:Child; D032882:Comprehension; D003210:Concept Formation; D003657:Decision Making; D030881:Disclosure / Q000941:ethics; D032984:Ethics, Research; D005260:Female; D020022:Genetic Predisposition to Disease; D016678:Genome; D023281:Genomics / Q000941:ethics; D006801:Humans; D007258:Informed Consent / Q000941:ethics / Q000523:psychology; D008297:Male; D008875:Middle Aged; D008960:Models, Psychological; D010290:Parents / Q000523:psychology; D035501:Uncertainty
biobank; cognitive interviews; genomic research; individual research results; participant preferences; pediatrics; qualitative research; return of results