title: Disclosing Secondary Findings from Pediatric Sequencing to Families: Considering the "Benefit to Families".
abstract: Secondary findings for adult-onset diseases in pediatric clinical sequencing can benefit parents or other family members. In the absence of data showing harm, it is ethically reasonable for parents to request such information, because in other types of medical decision-making, they are often given discretion unless their decisions clearly harm the child. Some parents might not want this information because it could distract them from focusing on the child's underlying condition that prompted sequencing. Collecting family impact data may improve future policy determinations.
authors.affiliation: Director of the Treuman Katz Center for Pediatric Bioethics at Seattle Children's Hospital; Professor and Chief of the Division of Bioethics; Professor, Pulmonary and Sleep Medicine, Department of Pediatrics; and Adjunct Professor, Department of Bioethics and Humanities, at the University of Washington School of Medicine. He is Immediate Past President of the Association of Bioethics Program Directors, Chair of the Clinical Research Ethics Collaborative, and Co-Chair of the Pediatric Working Group for the NHGRI/NCI Clinical Sequencing Exploratory Research (CSER) Consortium. His scholarship focuses on ethical issues related to genetics, pediatrics, research, and their interrelationships.
authors.forename: Benjamin S
authors.initials: BS
authors.lastname: Wilfond
authors.affiliation: Chief of the Division of Pediatric Hematology/Oncology at IWK Health Centre and Professor of Pediatrics and Bioethics at Dalhousie University. He obtained his Hon. B.Sc. at the University of Western Ontario, his medical degree at McMaster University, specialist certification in Pediatrics as a Fellow of the Royal College of Physicians and Surgeons of Canada at Dalhousie University, and completed specialty training in Pediatric Hematology/Oncology at the University of British Columbia.
authors.forename: Conrad V
authors.initials: CV
authors.lastname: Fernandez
authors.affiliation: Directs the Genomes-2People Research Program and Translational Genomics and Health Outcomes within the Division of Genetics, Department of Medicine, Brigham and Women's Hospital, with appointments at the Broad Institute and Harvard Medical School. He is also Associate Director for Research, Partners HealthCare Personalized Medicine.
authors.forename: Robert C
authors.initials: RC
authors.lastname: Green
mesh_terms: D000328:Adult; D002648:Child; D003376:Counseling / Q000941:ethics; D003657:Decision Making / Q000941:ethics; D030881:Disclosure / Q000941:ethics*; D005190:Family; D005820:Genetic Testing / Q000941:ethics; D006801:Humans; D017421:Sequence Analysis