Data sharing ethics toolkit: The Human Cell Atlas

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• dc.contributor.author Kirby, Emily
• dc.contributor.author Bernier, Alexander
• dc.contributor.author Guigó Serra, Roderic
• dc.contributor.author Wold, Barbara J.
• dc.contributor.author Arzuaga, Fabiana
• dc.contributor.author Kusunose, Mayumi
• dc.contributor.author Zawati, Ma'n
• dc.contributor.author Knoppers, Bartha M.
• dc.date.accessioned 2025-01-14T13:56:46Z
• dc.date.available 2025-01-14T13:56:46Z
• dc.date.issued 2024
• dc.description.abstract 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.
• dc.format.mimetype application/pdf
• dc.identifier.citation Kirby E, Bernier A, Guigó R, Wold B, Arzuaga F, Kusunose M, et al. Data sharing ethics toolkit: The Human Cell Atlas. Nat Commun. 2024 Nov 20;15(1):9901. DOI: 10.1038/s41467-024-54300-3
• dc.identifier.doi http://dx.doi.org/10.1038/s41467-024-54300-3
• dc.identifier.issn 2041-1723
• dc.identifier.uri http://hdl.handle.net/10230/69121
• dc.language.iso eng
• dc.publisher Nature Research
• dc.relation.ispartof Nat Commun. 2024 Nov 20;15(1):9901
• dc.rights © The Author(s) 2024. Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/.
• dc.rights.accessRights info:eu-repo/semantics/openAccess
• dc.rights.uri http://creativecommons.org/licenses/by/4.0/
• dc.subject.keyword Databases
• dc.subject.keyword Ethics
• dc.subject.keyword Genetic databases
• dc.subject.keyword Law
• dc.title Data sharing ethics toolkit: The Human Cell Atlas
• dc.type info:eu-repo/semantics/article
• dc.type.version info:eu-repo/semantics/publishedVersion