title: Disclosure of incidental findings from next-generation sequencing in pediatric genomic research.
abstract: Next-generation sequencing technologies will likely be used with increasing frequency in pediatric research. One consequence will be the increased identification of individual genomic research findings that are incidental to the aims of the research. Although researchers and ethicists have raised theoretical concerns about incidental findings in the context of genetic research, next-generation sequencing will make this once largely hypothetical concern an increasing reality. Most commentators have begun to accept the notion that there is some duty to disclose individual genetic research results to research subjects; however, the scope of that duty remains unclear. These issues are especially complicated in the pediatric setting, where subjects cannot currently but typically will eventually be able to make their own medical decisions at the age of adulthood. This article discusses the management of incidental findings in the context of pediatric genomic research. We provide an overview of the current literature and propose a framework to manage incidental findings in this unique context, based on what we believe is a limited responsibility to disclose. We hope this will be a useful source of guidance for investigators, institutional review boards, and bioethicists that anticipates the complicated ethical issues raised by advances in genomic technology.
authors: Department of Bioethics, Clinical Center, National Human Genome Research Institute, National Institutes of Health, Bethesda, MD 20892-1156, USA.
authors: Ruqayyah
authors: R
authors: Abdul-Karim
authors: Benjamin E
authors: BE
authors: Berkman
authors: David
authors: D
authors: Wendler
authors: Annette
authors: A
authors: Rid
authors: Javed
authors: J
authors: Khan
authors: Tom
authors: T
authors: Badgett
authors: Sara Chandros
authors: SC
authors: Hull
mesh_terms: D002648:Child; D030881:Disclosure / Q000941:ethics / Q000639:trends*; D036281:Genetic Research / Q000941:ethics; D023281:Genomics / Q000941:ethics / Q000639:trends*; D006801:Humans; D033162:Incidental Findings; D017422:Sequence Analysis, DNA / Q000941:ethics / Q000639:trends*
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