title: Pediatric Issues in Return of Results and Incidental Findings: Weighing Autonomy and Best Interests.
abstract: Nowhere are the ethical issues in genomic research more complex than in pediatrics. Balancing the sometime conflicting autonomy of the parent and the child, and the best interest of the family and the child, brings up many challenging issues. Addressing this balance, especially in the context of the child's developing maturity and comprehension, requires deep analysis and discussion. Issues discussed include the impact of genetic information on the family, parental versus the child's autonomy, the best interests of the child versus the family, potential limitations on the parents' right to know or not know information about their child, and changing role of the developing child in return of research results. Finally, a dynamic model will be proposed that takes into consideration the child's evolving role in consenting and return of results that can be adapted in different national contexts.
authors.affiliation: 1 Division of Genetics and Genomics, Boston Children's Hospital , Boston, Massachusetts.|2 The Manton Center for Orphan Disease Research , Boston Children's Hospital, Boston, Massachusetts.|3 Department of Pediatrics, Harvard Medical School , Boston, Massachusetts.
authors.forename: Ingrid A
authors.initials: IA
authors.lastname: Holm
mesh_terms: D000293:Adolescent; D026688:Bioethical Issues; D018070:Biological Specimen Banks / Q000941:ethics*; D002648:Child; D002675:Child, Preschool; D003219:Confidentiality / Q000941:ethics*; D005260:Female; D006801:Humans; D008297:Male; D008962:Models, Theoretical
keywords: consent; ethics; pediatrics; return of genomic results