title: DECIDE: a Decision Support Tool to Facilitate Parents' Choices Regarding Genome-Wide Sequencing.
abstract: We describe the rationale, development, and usability testing for an integrated e-learning tool and decision aid for parents facing decisions about genome-wide sequencing (GWS) for their children with a suspected genetic condition. The online tool, DECIDE, is designed to provide decision-support and to promote high quality decisions about undergoing GWS with or without return of optional incidental finding results. DECIDE works by integrating educational material with decision aids. Users may tailor their learning by controlling both the amount of information and its format - text and diagrams and/or short videos. The decision aid guides users to weigh the importance of various relevant factors in their own lives and circumstances. After considering the pros and cons of GWS and return of incidental findings, DECIDE summarizes the user's responses and apparent preferred choices. In a usability study of 16 parents who had already chosen GWS after conventional genetic counselling, all participants found DECIDE to be helpful. Many would have been satisfied to use it alone to guide their GWS decisions, but most would prefer to have the option of consulting a health care professional as well to aid their decision. Further testing is necessary to establish the effectiveness of using DECIDE as an adjunct to or instead of conventional pre-test genetic counselling for clinical genome-wide sequencing.
authors.affiliation: Department of Medical Genetics, Children's and Women's Hospital, University of British Columbia, Box 153, 4500 Oak Street, Vancouver, BC, V6H 3N1, Canada. Patricia.Birch@ubc.ca.
authors.forename: Patricia
authors.initials: P
authors.lastname: Birch
authors.affiliation: Department of Medical Genetics, Children's and Women's Hospital, University of British Columbia, Box 153, 4500 Oak Street, Vancouver, BC, V6H 3N1, Canada.
authors.forename: S
authors.initials: S
authors.lastname: Adam
authors.affiliation: School of Population and Public Health, University of British Columbia, Vancouver, BC, Canada.
authors.forename: N
authors.initials: N
authors.lastname: Bansback
authors.affiliation: Department of Medical Genetics, Children's and Women's Hospital, University of British Columbia, Box 153, 4500 Oak Street, Vancouver, BC, V6H 3N1, Canada.
authors.forename: R R
authors.initials: RR
authors.lastname: Coe
authors.affiliation: School of Population and Public Health, University of British Columbia, Vancouver, BC, Canada.
authors.forename: J
authors.initials: J
authors.lastname: Hicklin
authors.affiliation: Department of Medical Genetics, Children's and Women's Hospital, University of British Columbia, Box 153, 4500 Oak Street, Vancouver, BC, V6H 3N1, Canada.
authors.forename: A
authors.initials: A
authors.lastname: Lehman
authors.affiliation: Department of Medical Genetics, Children's and Women's Hospital, University of British Columbia, Box 153, 4500 Oak Street, Vancouver, BC, V6H 3N1, Canada.
authors.forename: K C
authors.initials: KC
authors.lastname: Li
authors.affiliation: Department of Medical Genetics, Children's and Women's Hospital, University of British Columbia, Box 153, 4500 Oak Street, Vancouver, BC, V6H 3N1, Canada.
authors.forename: J M
authors.initials: JM
authors.lastname: Friedman
mesh_terms: D000293:Adolescent; D002648:Child; D002675:Child, Preschool; D003661:Decision Support Techniques; D005260:Female; D005817:Genetic Counseling / Q000379:methods*; D005820:Genetic Testing; D006801:Humans; D008297:Male; D010290:Parents / Q000193:education*; D012017:Referral and Consultation; D017422:Sequence Analysis, DNA; D012984:Software
keywords: Decision aid; Decision support; E-counselling; Genomic and genetic sequencing; Genomic counselling; Usability study