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.

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GDPR 时代的开放数据：人类细胞图谱的教训

人类细胞图谱（HCA）正在努力建立一个开放的社区，包容所有遵守其原则的研究人员，并在数据访问和使用方面尽可能开放。然而，开放数据共享可能会带来一定的挑战。例如，作为一项全球倡议，HCA 必须应对当地和区域隐私规则的拼凑。一个显着的例子是欧盟通用数据保护条例（GDPR）的实施，这引起了生物医学和基因组数据共享界的一些担忧。我们研究了 HCA 庞大的国际研究小组如何投入巨大的努力来确保数据的适当共享。我们描述了 HCA 的目标和治理、它如何定义开放数据共享以及其发展早期遇到的道德法律挑战；我们特别描述了 GDPR 带来的挑战。最后，我们扩大讨论范围，讨论可用于解决道德数据治理问题的工具和策略。