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Special Communication
May 2018

Key Implications of Data Sharing in Pediatric Genomics

Author Affiliations
  • 1Centre of Genomics and Policy, McGill University, Montreal, Quebec, Canada
  • 2Department of Medical Oncology, Programme for Ethics and Patient-Oriented Care in Oncology, National Center for Tumor Diseases, Heidelberg University Hospital, Heidelberg Germany
  • 3Centre for Biomedical Ethics and Law, Leuven, Belgium
  • 4Division of Hematology-Oncology, IWK HealthCentre, Halifax, Nova Scotia, Canada
  • 5Pediatric Neurooncology, Deutsches Krebsforschungszentrum, Heidelberg, Germany
  • 6Cancer Genetics and Genomics Program, Department of Pediatrics, Section of Hematology-Oncology, Baylor College of Medicine, Houston, Texas
  • 7Department of Molecular and Human Genetics, Baylor College of Medicine, Houston, Texas
  • 8Genetic Alliance, Washington, DC
  • 9Geisinger Health, Genomic Medicine Institute, Danville, Pennsylvania
  • 10Clinical Genetics/EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, the Netherlands
  • 11Department of Medical Genetics, University of British Columbia, Vancouver, British Columbia, Canada
  • 12Medical Genetics Research Unit, Children’s & Women’s Hospital, Vancouver, British Columbia, Canada
JAMA Pediatr. 2018;172(5):476-481. doi:10.1001/jamapediatrics.2017.5500
Abstract

Accurate clinical interpretation of children’s whole-genome and whole-exome sequences relies on comparing the patient’s linked genomic and phenotypic data with variant reference databases of both healthy and affected patients. The robustness of such comparisons, in turn, is made possible by sharing pediatric genomic and associated clinical data. Despite this, sparse ethical-legal policy attention has been paid to making such sharing routine in practice. The interdisciplinary Paediatric Task Team of the Global Alliance for Genomics and Health considered in detail the current ethical, legal, and social implications of sharing genomic and associated clinical data involving children. An initial set of points to consider was presented at a meeting of the Paediatric Task Team at the 4th Plenary of the Global Alliance for Genomics and Health. The Key Implications for Data Sharing (KIDS) framework for pediatric genomics was developed based on feedback from this group and was supplemented by findings from a critical appraisal of the data-sharing literature. The final points to consider that comprise the KIDS framework are categorized into the following 4 primary themes: children’s involvement, parental consent, balancing benefits and risks, and data protection and release requirements.

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