Open Data in the Era of the GDPR: Lessons from the Human Cell Atlas
| Autor: | Bartha Maria Knoppers, Alexander Bernier, Sarion Bowers, Emily Kirby |
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| Rok vydání: | 2023 |
| Předmět: | |
| Zdroj: | Annual Review of Genomics and Human Genetics. 24 |
| ISSN: | 1545-293X 1527-8204 |
| DOI: | 10.1146/annurev-genom-101322-113255 |
| Popis: | 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. Expected final online publication date for the Annual Review of Genomics and Human Genetics, Volume 24 is August 2023. Please see http://www.annualreviews.org/page/journal/pubdates for revised estimates. |
| Databáze: | OpenAIRE |
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