May 2018, Vol 172, No. 5, Pages 401-504
Key Implications of Data Sharing in Pediatric Genomics
Vasiliki Rahimzadeh, MSc; Christoph Schickhardt, JD, PhD; Bartha M. Knoppers, PhD; et al.
JAMA Pediatr. 2018;172(5):476-481. doi:10.1001/jamapediatrics.2017.5500
This special communication discusses the current ethical, legal, and social implications of sharing genomic and associated clinical data involving children.
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.