Journal of Empirical Research on Human Research Ethics
Volume 13 Issue 4, October 2018
Parent and Child Perspectives on Research Participation
Adolescent and Parental Attitudes About Return of Genomic Research Results: Focus Group Findings Regarding Decisional Preferences
Michelle L. McGowan, Cynthia A. Prows, Melissa DeJonckheere, William B. Brinkman, Lisa Vaughn, Melanie F. Myers
First Published May 28, 2018; pp. 371–382
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.