Adolescents’ preferences regarding disclosure of incidental findings in genomic sequencing that are not medically actionable in childhood

Abstract

Next-generation sequencing has challenged the consensus that predictive testing should not be performed on asymptomatic minors for conditions that are not medically actionable in childhood. While the available literature suggests that most parents want access to incidental findings discovered in genomic sequencing, there is little information regarding adolescents' views. This study's goal is to determine adolescent views regarding the disclosure of incidental findings for adult onset conditions that are not medically actionable in childhood. We conducted a cross-sectional survey of students enrolled in 7-12th grade science classes in three Cincinnati public schools. Most (235 of 282, 83%) students wanted access to non-actionable incidental findings. These participants most frequently (38%) endorsed future planning as the reason for disclosure. Seventy-two percent of students believed they should participate in the decision making process. Seventy-three percent of students believed that parents of children less than 12 years old should have access to this information. Adolescents want to have access to and participate in decisions about incidental findings. © 2016 Wiley Periodicals, Inc.