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Pediatrics. 2015 Oct;136(4):e974-82. doi: 10.1542/peds.2015-0624. Epub 2015 Sep 14.

Professionally Responsible Disclosure of Genomic Sequencing Results in Pediatric Practice.

Author information

1
Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas; laurence.mccullough@bcm.edu.
2
Department of Pediatrics, University of Louisville, Louisville, Kentucky;
3
Department of Pediatrics, Columbia University, New York, New York;
4
Department of Medical Ethics and Health Policy, University of Pennsylvania Perelman School of Medicine, Philadelphia, Pennsylvania;
5
Department of Social and Behavioral Sciences University of California at San Francisco, San Francisco, California; and.
6
Department of Pediatrics, University of Washington, Seattle, Washington.

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.

PMID:
26371191
PMCID:
PMC4586726
DOI:
10.1542/peds.2015-0624
[Indexed for MEDLINE]
Free PMC Article

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