The "A" of FAIR - As Open as Possible, as Closed as Necessary
The "A" of FAIR - As Open as Possible, as Closed as Necessary
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DOI：
10.1162/dint_a_00027
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发表时间：
2020-12-01
影响因子：
3.9
通讯作者：
Roos, Marco
中科院分区：
文献类型：
--
作者：
Landi, Annalisa;Thompson, Mark;Roos, Marco
为了通过协调数据共享的好处与隐私权以及道德和监管要求，提供对健康数据的负责任的访问，应开发可查找、可解释、可互操作和可重复使用的元数据。根据H2020公平数据计划指南，数据应“尽可能开放，必要时尽可能封闭”，“开放”是为了促进可重用性和加速研究，但同时它们应“封闭”以保护受试者的隐私。关于在处理个人数据方面保护自然人的其他规定已得到2018年5月生效的《欧洲通用数据保护条例》（GDPR）Reg（EU）2016/679的认可。这项工作旨在解决与数字时代个人数据保护有关的可访问性问题，并实现负责任地访问和使用健康数据。我们强烈建议将每个数据集与FAIR元数据相关联，通过考虑数据保护义务以及道德和监管要求，描述收集的数据类型和可访问条件。最后，一个现有的公平的基础设施组件已被用来作为一个例子来解释公平的元数据可以促进数据共享，同时确保个人的保护。
In order to provide responsible access to health data by reconciling benefits of data sharing with privacy rights and ethical and regulatory requirements, Findable, Accessible, Interoperable and Reusable (FAIR) metadata should be developed. According to the H2020 Program Guidelines on FAIR Data, data should be "as open as possible and as closed as necessary", "open" in order to foster the reusability and to accelerate research, but at the same time they should be "closed" to safeguard the privacy of the subjects. Additional provisions on the protection of natural persons with regard to the processing of personal data have been endorsed by the European General Data Protection Regulation (GDPR), Reg (EU) 2016/679, that came into force in May 2018. This work aims to solve accessibility problems related to the protection of personal data in the digital era and to achieve a responsible access to and responsible use of health data. We strongly suggest associating each data set with FAIR metadata describing both the type of data collected and the accessibility conditions by considering data protection obligations and ethical and regulatory requirements. Finally, an existing FAIR infrastructure component has been used as an example to explain how FAIR metadata could facilitate data sharing while ensuring protection of individuals.