Centre of Genomics and Policy, School of Biomedical Sciences, Faculty of Medicine and Health Sciences, McGill University, 740 Dr. Penfield, Suite 5200, Montreal, QC, Canada.
Bioinformatics and Genomics, Center for Genomic Regulation (CRG), The Barcelona Institute for Science and Technology (BIST), Dr. Aiguader 88, Barcelona, Catalonia, Spain.
Nat Commun. 2024 Nov 20;15(1):9901. doi: 10.1038/s41467-024-54300-3.
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.
努力构建一个详尽的人类细胞类型和特性指南，人类细胞图谱（HCA）的成功依赖于对不同人群、发育阶段和组织类型的采样。其开放科学理念提倡快速、无缝地共享数据——尽可能开放。鉴于这样一个国际倡议的范围和雄心，HCA 伦理工作组（EWG）一直在努力为解决数据收集和共享的复杂性奠定坚实的基础，这是 Atlas 开发的一部分。事实上，HCA 的一个特别挑战是采样场景的多样性（例如，活体参与者、已故供体、儿科人群、文化背景多样化、来自不同发育阶段的组织等），以及与采样相关的道德和法律规范因参与国而异。因此，EWG 尽可能地制定了协调的、国际的和可互操作的政策和工具，以指导其研究社区。本文提供了 EWG 提出的挑战类型和方法的概述。
