Adolescent and Parental Attitudes About Return of Genomic Research Results: Focus Group Findings Regarding Decisional Preferences. (October 2018)

• Record Type: Journal Article
• Authors: McGowan, Michelle L.; Prows, Cynthia A.; DeJonckheere, Melissa; Brinkman, William B.; Vaughn, Lisa; Myers, Melanie F.
• Is Part Of: Journal of empirical research on human research ethics. Volume 13:Number 4(2018)
• Page Start: 371
• Page End: 382
• Publication Date: 2018-10
• Subjects: adolescent preferences -- genome sequencing -- genetic testing -- return of results -- focus group -- decision aid -- participant preferences -- pediatrics -- return of individual genomic research results; Medical ethics -- Research -- Periodicals; Research -- Moral and ethical aspects -- Periodicals; 174.205
• DOI: 10.1177/1556264618776613
• Languages: English
• ISSNs: 1556-2646

Abstract

Opportunities to participate in genomic sequencing studies, as well as recommendations to screen for variants in 59 medically actionable genes anytime clinical genomic sequencing is performed, indicate adolescents will increasingly be involved in decisions about learning secondary findings from genome sequencing. However, how adolescents want to be involved in such decisions is unknown. We conducted five focus groups with adolescents (2) and parents (3) to learn their decisional preferences about return of genomic research results to adolescents. Discussions about decisional preferences centered around three themes: feelings about receiving genomic risk information, adolescent involvement and capacity to participate in decision-making, and recommendations for parental versus collaborative decision-making. We address the contested space between parental duties to act in their children's best interests when choosing which results to return and adolescents' desires to make autonomous decisions. A collaborative decision-making approach is recommended for obtaining consent from adolescents and their parents for genome sequencing research.