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Data sharing ethics toolkit: The Human Cell Atlas
Nature Communications ( IF 14.7 ) Pub Date : 2024-11-20 , DOI: 10.1038/s41467-024-54300-3
Emily Kirby, Alexander Bernier, Roderic Guigó, Barbara Wold, Fabiana Arzuaga, Mayumi Kusunose, Ma’n Zawati, Bartha M. Knoppers

Striving to build an exhaustive guidebook of the types and properties of human cells, the Human Cell Atlas’ (HCA) success relies on the sampling of diverse populations, developmental stages, and tissue types. Its open science philosophy preconizes the rapid, seamless sharing of data – as openly as possible. In light of the scope and ambition of such an international initiative, the HCA Ethics Working Group (EWG) has been working to build a solid foundation to address the complexities of data collection and sharing as part of Atlas development. Indeed, a particular challenge of the HCA is the diversity of sampling scenarios (e.g., living participants, deceased donors, pediatric populations, culturally diverse backgrounds, tissues from various developmental stages, etc.), and associated ethical and legal norms, which vary across countries contributing to the effort. Hence, to the extent possible, the EWG set out to provide harmonised, international and interoperable policies and tools, to guide its research community. This paper provides a high-level overview of the types of challenges and approaches proposed by the EWG.



中文翻译:


数据共享伦理工具包:人类细胞图谱



人类细胞图谱 (HCA) 致力于构建一本关于人类细胞类型和特性的详尽指南,其成功依赖于对不同群体、发育阶段和组织类型的采样。其开放科学理念以快速、无缝的数据共享为前提——尽可能公开。鉴于这样一项国际倡议的范围和雄心,HCA 道德工作组 (EWG) 一直在努力建立坚实的基础,以解决作为 Atlas 开发一部分的数据收集和共享的复杂性。事实上,HCA 的一个特殊挑战是采样情景的多样性(例如,活着的参与者、已故的捐献者、儿科人群、文化多元背景、来自不同发育阶段的组织等)以及相关的道德和法律规范,这些规范因参与这项工作的国家而异。因此,EWG 着手在可能的情况下提供协调一致、国际化和可互操作的政策和工具,以指导其研究界。本文对 EWG 提出的挑战类型和方法进行了高级概述。

更新日期:2024-11-20
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