Sharing and Safeguarding Pediatric Data.
data sharing
genomics
pediatric research
policy
research ethics
Journal
Frontiers in genetics
ISSN: 1664-8021
Titre abrégé: Front Genet
Pays: Switzerland
ID NLM: 101560621
Informations de publication
Date de publication:
2022
2022
Historique:
received:
09
02
2022
accepted:
30
05
2022
entrez:
7
7
2022
pubmed:
8
7
2022
medline:
8
7
2022
Statut:
epublish
Résumé
Data sharing is key to advancing our understanding of human health and well-being. While issues related to pediatric research warrant strong ethical protections, overly protectionist policies may serve to exclude minors from data sharing initiatives. Pediatric data sharing is critical to scientific research concerning health and well-being, to say nothing of understanding human development generally. For example, large-scale pediatric longitudinal studies, such as those in the DREAM-BIG Consortium, on the influence of prenatal adversity factors on child psychopathology, will provide prevention data and generate future health benefits. Recent initiatives have formulated sound policy to help enable and foster data sharing practices for pediatric research. To help translate these policy initiatives into practice, we discuss how model consent clauses for pediatric research can help address some of the issues and challenges of pediatric data sharing, while enabling data sharing.
Identifiants
pubmed: 35795212
doi: 10.3389/fgene.2022.872586
pii: 872586
pmc: PMC9251179
doi:
Types de publication
Journal Article
Langues
eng
Pagination
872586Informations de copyright
Copyright © 2022 Patrinos, Knoppers, Laplante, Rahbari and Wazana.
Déclaration de conflit d'intérêts
The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.
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