Data sharing ethics toolkit: The Human Cell Atlas

Emily Kirby (), Alexander Bernier, Roderic Guigó, Barbara Wold, Fabiana Arzuaga, Mayumi Kusunose, Ma’n Zawati and Bartha M. Knoppers
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Emily Kirby: Suite 5200
Alexander Bernier: Suite 5200
Roderic Guigó: Dr. Aiguader 88
Barbara Wold: California Institute of Technology
Fabiana Arzuaga: Technology and Innovation -Argentina Godoy Cruz 2320. 4th Floor
Mayumi Kusunose: Tsurumi-ku
Ma’n Zawati: Suite 5200
Bartha M. Knoppers: Suite 5200

Nature Communications, 2024, vol. 15, issue 1, 1-7

Abstract: 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.

Date: 2024
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DOI: 10.1038/s41467-024-54300-3

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