Key Implications of Data Sharing in Pediatric Genomics.
Vasiliki Rahimzadeh, Christoph Schickhardt, Bartha M Knoppers, Karine Sénécal, Danya F Vears, Conrad V Fernandez, Stefan Pfister, Sharon Plon, Sharon Terry, Janet Williams, Marc S Williams, Martina Cornel, Jan M Friedman
Author Information
Vasiliki Rahimzadeh: Centre of Genomics and Policy, McGill University, Montreal, Quebec, Canada.
Christoph Schickhardt: Department of Medical Oncology, Programme for Ethics and Patient-Oriented Care in Oncology, National Center for Tumor Diseases, Heidelberg University Hospital, Heidelberg Germany.
Bartha M Knoppers: Centre of Genomics and Policy, McGill University, Montreal, Quebec, Canada.
Karine Sénécal: Centre of Genomics and Policy, McGill University, Montreal, Quebec, Canada.
Danya F Vears: Centre for Biomedical Ethics and Law, Leuven, Belgium.
Conrad V Fernandez: Division of Hematology-Oncology, IWK HealthCentre, Halifax, Nova Scotia, Canada.
Stefan Pfister: Pediatric Neurooncology, Deutsches Krebsforschungszentrum, Heidelberg, Germany.
Sharon Plon: Cancer Genetics and Genomics Program, Department of Pediatrics, Section of Hematology-Oncology, Baylor College of Medicine, Houston, Texas.
Sharon Terry: Genetic Alliance, Washington, DC.
Janet Williams: Geisinger Health, Genomic Medicine Institute, Danville, Pennsylvania.
Marc S Williams: Geisinger Health, Genomic Medicine Institute, Danville, Pennsylvania.
Martina Cornel: Clinical Genetics/EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, the Netherlands.
Jan M Friedman: Department of Medical Genetics, University of British Columbia, Vancouver, British Columbia, Canada.
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.
