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"Arzuaga, Fabiana"
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Data sharing ethics toolkit: The Human Cell Atlas
by
Knoppers, Bartha M.
,
Kirby, Emily
,
Wold, Barbara
in
631/114/129
,
706/648/697/129/2043
,
706/689/179
2024
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.
The human cell atlas (HCA) is intended as an exhaustive guidebook of human cell types and their properties. Here Kirby et al. outline how the HCA Ethics Working Group is working to build a solid foundation to address the complexities of data collection and sharing.
Journal Article
Expression of concern for global biomedical research by the human genome organization (HUGO)
by
Bowcock, Anne
,
Lopes-Cendes, Iscia
,
A. Veltman, Joris
in
Bioinformatics
,
Biomedical and Life Sciences
,
Biomedical research
2025
Cuts to US science funding will stall advances in genomics affecting public health, rare disease and cancer diagnostics and therapeutics in the US and around the world.Cuts to US science funding will stall advances in genomics affecting public health, rare disease and cancer diagnostics and therapeutics in the US and around the world.
Journal Article
The commitment of the human cell atlas to humanity
2024
The Human Cell Atlas (HCA) is a global partnership “to create comprehensive reference maps of all human cells—the fundamental units of life – as a basis for both understanding human health and diagnosing, monitoring, and treating disease.” (
https://www.humancellatlas.org/
) The atlas shall characterize cells from diverse individuals across the globe to better understand human biology. HCA proactively considers the priorities of, and benefits accrued to, contributing communities. Here, we lay out principles and action items that have been adopted to affirm HCA’s commitment to equity so that the atlas is beneficial to all of humanity.
The Human Cell Atlas (HCA) aims to characterize cells from diverse individuals across the globe to better understand human biology. Here, the authors lay out principles and action items that have been adopted to affirm HCA’s commitment to equity so that the atlas is beneficial to all of humanity.
Journal Article