TY - JOUR
KW - Databases
KW - ethics
KW - Genetic databases
KW - Law
AU - Emily Kirby
AU - Alexander Bernier
AU - Roderic Guigo
AU - Barbara Wold
AU - Fabiana Arzuaga
AU - Mayumi Kusunose
AU - Ma’n Zawati
AU - Bartha M. Knoppers
AB - 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.
BT - Nature Communications
DA - 2024-11-20
DO - 10.1038/s41467-024-54300-3
IS - 1
LA - en
N2 - 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.
PY - 2024
EP - 9901
ST - Data sharing ethics toolkit
T2 - Nature Communications
TI - Data sharing ethics toolkit: The Human Cell Atlas
UR - https://www.nature.com/articles/s41467-024-54300-3
VL - 15
Y2 - 2024-11-26
SN - 2041-1723
ER -