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.
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March 2013
Special Article|
March 01 2013
Disclosure of Incidental Findings From Next-Generation Sequencing in Pediatric Genomic Research
Ruqayyah Abdul-Karim, BA;
Ruqayyah Abdul-Karim, BA
aDepartment of Bioethics, Clinical Center,
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Benjamin E. Berkman, JD;
Benjamin E. Berkman, JD
aDepartment of Bioethics, Clinical Center,
bOffice of the Clinical Director, National Human Genome Research Institute, and
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David Wendler, PhD;
David Wendler, PhD
aDepartment of Bioethics, Clinical Center,
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Annette Rid, MD;
Annette Rid, MD
cDepartment of Social Science, Health, and Medicine, King’s College, London, United Kingdom; and
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Javed Khan, MD;
Javed Khan, MD
dPediatric Oncology Branch, National Cancer Institute, National Institutes of Health, Bethesda Maryland;
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Tom Badgett, MD;
Tom Badgett, MD
eDepartment of Pediatrics, University of Kentucky College of Medicine, Lexington, Kentucky
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Sara Chandros Hull, PhD
aDepartment of Bioethics, Clinical Center,
bOffice of the Clinical Director, National Human Genome Research Institute, and
Address correspondence to Sara Chandros Hull, PhD, Faculty, Department of Bioethics, Clinical Center, and Director, Bioethics Core, National Human Genome Research Institute, National Institutes of Health, 10 Center Dr, Ste 1C118, Bethesda, MD 20892-1156. E-mail: shull@mail.nih.gov
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Address correspondence to Sara Chandros Hull, PhD, Faculty, Department of Bioethics, Clinical Center, and Director, Bioethics Core, National Human Genome Research Institute, National Institutes of Health, 10 Center Dr, Ste 1C118, Bethesda, MD 20892-1156. E-mail: shull@mail.nih.gov
FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.
Pediatrics (2013) 131 (3): 564–571.
Article history
Accepted:
November 07 2012
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Citation
Ruqayyah Abdul-Karim, Benjamin E. Berkman, David Wendler, Annette Rid, Javed Khan, Tom Badgett, Sara Chandros Hull; Disclosure of Incidental Findings From Next-Generation Sequencing in Pediatric Genomic Research. Pediatrics March 2013; 131 (3): 564–571. 10.1542/peds.2012-0084
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