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Annual Review of Genomics and Human Genetics

Volume 24, 2023

Open Data in the Era of the GDPR: Lessons from the Human Cell Atlas

Abstract

The Human Cell Atlas (HCA) is striving to build an open community that is inclusive of all researchers adhering to its principles and as open as possible with respect to data access and use. However, open data sharing can pose certain challenges. For instance, being a global initiative, the HCA must contend with a patchwork of local and regional privacy rules. A notable example is the implementation of the European Union General Data Protection Regulation (GDPR), which caused some concern in the biomedical and genomic data-sharing community. We examine how the HCA's large, international group of researchers is investing tremendous efforts into ensuring appropriate sharing of data. We describe the HCA's objectives and governance, how it defines open data sharing, and ethico-legal challenges encountered early in its development; in particular, we describe the challenges prompted by the GDPR. Finally, we broaden the discussion to address tools and strategies that can be used to address ethical data governance.

Keyword(s): biomedical ethics, data protection, data sharing, GDPR, genomics, open science
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/content/journals/10.1146/annurev-genom-101322-113255
2023-08-25
2024-04-29
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/content/journals/10.1146/annurev-genom-101322-113255
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Open Data in the Era of the GDPR: Lessons from the Human Cell Atlas
Annual Review of Genomics and Human Genetics 24, 369 (2023); https://doi.org/10.1146/annurev-genom-101322-113255
/content/journals/10.1146/annurev-genom-101322-113255
/content/journals/10.1146/annurev-genom-101322-113255
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