title: 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.
authors.affiliation: Division of Human Genetics, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio.|Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, Ohio.|Division of Genetics and Metabolics, Children's National Health System, Washington, District of Columbia.
authors.forename: Sophia B
authors.initials: SB
authors.lastname: Hufnagel
authors.affiliation: Division of Human Genetics, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio.|Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, Ohio.
authors.forename: Lisa J
authors.initials: LJ
authors.lastname: Martin
authors.affiliation: Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, Ohio.|Division of Biostatistics and Epidemiology, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio.
authors.forename: Amy
authors.initials: A
authors.lastname: Cassedy
authors.affiliation: Division of Human Genetics, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio.|Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, Ohio.
authors.forename: Robert J
authors.initials: RJ
authors.lastname: Hopkin
authors.affiliation: Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, Ohio.|Division of Hospital Medicine, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio.
authors.forename: Armand H Matheny
authors.initials: AH
authors.lastname: Antommaria
mesh_terms: D000293:Adolescent; D001483:Base Sequence; D002648:Child; D003430:Cross-Sectional Studies; D003657:Decision Making; D030881:Disclosure; D005260:Female; D005820:Genetic Testing; D015894:Genome, Human; D023281:Genomics; D059014:High-Throughput Nucleotide Sequencing; D006801:Humans; D033162:Incidental Findings; D008297:Male; D009820:Ohio / Q000453:epidemiology; D057240:Patient Preference; D013334:Students; D055815:Young Adult
keywords: adolescent; attitudes; genetic testing; health knowledge; incidental findings; practice