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共享与保护儿科数据。

Sharing and Safeguarding Pediatric Data.

作者信息

Patrinos Dimitri, Knoppers Bartha Maria, Laplante David P, Rahbari Noriyeh, Wazana Ashley

机构信息

Centre of Genomics and Policy, School of Biomedical Sciences, Faculty of Medicine and Health Sciences, McGill University, Montreal, QC, Canada.

Lady Davis Institute (LDI), Montreal, QC, Canada.

出版信息

Front Genet. 2022 Jun 20;13:872586. doi: 10.3389/fgene.2022.872586. eCollection 2022.

Abstract

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.

摘要

数据共享是增进我们对人类健康和福祉理解的关键。虽然与儿科研究相关的问题需要强有力的伦理保护,但过度保护主义政策可能会使未成年人被排除在数据共享倡议之外。儿科数据共享对于有关健康和福祉的科学研究至关重要,更不用说对人类整体发育的理解了。例如,大规模的儿科纵向研究,如梦想远大联盟(DREAM - BIG Consortium)中关于产前逆境因素对儿童精神病理学影响的研究,将提供预防数据并产生未来的健康益处。最近的倡议已经制定了合理的政策,以帮助推动和促进儿科研究的数据共享实践。为了帮助将这些政策倡议转化为实际行动,我们讨论儿科研究的示范同意条款如何有助于解决儿科数据共享的一些问题和挑战,同时实现数据共享。

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Model consent clauses for rare disease research.为罕见病研究制定同意条款。
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Ethical conundrums in pediatric genomics.儿科基因组学中的伦理难题。
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