title: Professionally Responsible Disclosure of Genomic Sequencing Results in Pediatric Practice.
abstract: Genomic sequencing is being rapidly introduced into pediatric clinical practice. The results of sequencing are distinctive for their complexity and subsequent challenges of interpretation for generalist and specialist pediatricians, parents, and patients. Pediatricians therefore need to prepare for the professionally responsible disclosure of sequencing results to parents and patients and guidance of parents and patients in the interpretation and use of these results, including managing uncertain data. This article provides an ethical framework to guide and evaluate the professionally responsible disclosure of the results of genomic sequencing in pediatric practice. The ethical framework comprises 3 core concepts of pediatric ethics: the best interests of the child standard, parental surrogate decision-making, and pediatric assent. When recommending sequencing, pediatricians should explain the nature of the proposed test, its scope and complexity, the categories of results, and the concept of a secondary or incidental finding. Pediatricians should obtain the informed permission of parents and the assent of mature adolescents about the scope of sequencing to be performed and the return of results.
authors.affiliation: Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas; laurence.mccullough@bcm.edu.
authors.forename: Laurence B
authors.initials: LB
authors.lastname: McCullough
authors.affiliation: Department of Pediatrics, University of Louisville, Louisville, Kentucky;
authors.forename: Kyle B
authors.initials: KB
authors.lastname: Brothers
authors.affiliation: Department of Pediatrics, Columbia University, New York, New York;
authors.forename: Wendy K
authors.initials: WK
authors.lastname: Chung
authors.affiliation: Department of Medical Ethics and Health Policy, University of Pennsylvania Perelman School of Medicine, Philadelphia, Pennsylvania;
authors.forename: Steven
authors.initials: S
authors.lastname: Joffe
authors.affiliation: Department of Social and Behavioral Sciences University of California at San Francisco, San Francisco, California; and.
authors.forename: Barbara A
authors.initials: BA
authors.lastname: Koenig
authors.affiliation: Department of Pediatrics, University of Washington, Seattle, Washington.
authors.forename: Benjamin
authors.initials: B
authors.lastname: Wilfond
authors.affiliation: Department of Pediatrics, University of Washington, Seattle, Washington.
authors.forename: Joon-Ho
authors.initials: JH
authors.lastname: Yu
mesh_terms: D000293:Adolescent; D002648:Child; D002669:Child Welfare / Q000941:ethics; D023281:Genomics / Q000941:ethics*; D006801:Humans; D057828:Informed Consent By Minors; D033282:Parental Consent / Q000941:ethics; D010372:Pediatrics / Q000941:ethics*; D017422:Sequence Analysis, DNA / Q000941:ethics*; D014342:Truth Disclosure / Q000941:ethics*