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Data sharing ethics toolkit: The Human Cell Atlas

Author

Listed:
  • Emily Kirby

    (Suite 5200)

  • Alexander Bernier

    (Suite 5200)

  • Roderic Guigó

    (Dr. Aiguader 88
    Universitat Pompeu Fabra (UPF))

  • 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)

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.

Suggested Citation

  • Emily Kirby & Alexander Bernier & Roderic Guigó & Barbara Wold & Fabiana Arzuaga & Mayumi Kusunose & Ma’n Zawati & Bartha M. Knoppers, 2024. "Data sharing ethics toolkit: The Human Cell Atlas," Nature Communications, Nature, vol. 15(1), pages 1-7, December.
    • Handle: RePEc:nat:natcom:v:15:y:2024:i:1:d:10.1038_s41467-024-54300-3
    DOI: 10.1038/s41467-024-54300-3
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    References listed on IDEAS

    as
    1. Orit Rozenblatt-Rosen & Michael J. T. Stubbington & Aviv Regev & Sarah A. Teichmann, 2017. "The Human Cell Atlas: from vision to reality," Nature, Nature, vol. 550(7677), pages 451-453, October.
    2. Muzlifah Haniffa & Deanne Taylor & Sten Linnarsson & Bruce J. Aronow & Gary D. Bader & Roger A. Barker & Pablo G. Camara & J. Gray Camp & Alain Chédotal & Andrew Copp & Heather C. Etchevers & Paolo Gi, 2021. "A roadmap for the Human Developmental Cell Atlas," Nature, Nature, vol. 597(7875), pages 196-205, September.
    3. Bartha Knoppers, 2018. "Broaden human-rights focus for health data under GDPR," Nature, Nature, vol. 558(7709), pages 189-189, June.
    4. Ting Wang & Lucinda Antonacci-Fulton & Kerstin Howe & Heather A. Lawson & Julian K. Lucas & Adam M. Phillippy & Alice B. Popejoy & Mobin Asri & Caryn Carson & Mark J. P. Chaisson & Xian Chang & Robert, 2022. "The Human Pangenome Project: a global resource to map genomic diversity," Nature, Nature, vol. 604(7906), pages 437-446, April.
    5. Partha Majumder & Musa Mhlanga & Alex Shalek & Roderic Guigó & Bartha Maria Knoppers & Barbara Wold, 2022. "How to ensure the Human Cell Atlas benefits humanity," Nature, Nature, vol. 605(7908), pages 30-30, May.
    Full references (including those not matched with items on IDEAS)

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