Journal article

Key Implications of Data Sharing in Pediatric Genomics

V Rahimzadeh, C Schickhardt, BM Knoppers, K Sénécal, DF Vears, CV Fernandez, S Pfister, S Plon, S Terry, J Williams, MS Williams, M Cornel, JM Friedman

JAMA Pediatrics | American Medical Association | Published : 2018

Abstract

© 2018 American Medical Association. All rights reserved. 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 an..

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University of Melbourne Researchers