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.
摘要：
人类细胞图谱（HCA）正在努力建立一个开放的社区，包括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,开放的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必须与当地和地区隐私规则的拼凑而成。一个值得注意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关注。我们检查HCA有多大，国际研究人员小组正在投入巨大的努力来确保适当的数据共享。我们描述了HCA的目标和治理，它如何定义开放数据共享，以及在其发展初期遇到的伦理法律挑战；特别是，我们描述了GDPR带来的挑战。最后,我们扩大了讨论范围，以解决可用于解决道德数据治理的工具和策略。基因组学和人类遗传学年度评论的预期最终在线出版日期，第24卷是2023年8月。请参阅http://www。annualreviews.org/page/journal/pubdates的订正估计数。
