The“A”of FAIR-As Open as Possible,as Closed as Necessary

作     者：Annalisa Landi Mark Thompson Viviana Giannuzzi Fedele Bonifazi Ignasi Labastida Luiz Olavo Bonino da Silva Santos Marco Roos Annalisa Landi;Mark Thompson;Viviana Giannuzzi;Fedele Bonifazi;Ignasi Labastida;Luiz Olavo Bonino da Silva Santos;Marco Roos

作者机构：Fondazione per la Ricerca Farmacologica Gianni Benzi Onlus30-70010 Valenzano(BA)Italy Leiden University Medical CenterLeiden2333 ZAThe Netherlands Learning and Research Resources Centre(CRAI)Universitat de BarcelonaCatalunya 08007Spain GO FAIR International Support&Coordination Office(GFISCO)LeidenThe Netherlands 

出 版 物：《Data Intelligence》 (数据智能（英文）)

年 卷 期：2020年第2卷第1期

页      面：47-55,303,304页

核心收录：

学科分类：1205[管理学-图书情报与档案管理] 0810[工学-信息与通信工程] 08[工学] 0839[工学-网络空间安全] 0811[工学-控制科学与工程] 081201[工学-计算机系统结构] 0812[工学-计算机科学与技术（可授工学、理学学位）] 

基　　金：Part of this work is funded by the NWA program(project VWData-400.17.605) by the Netherlands Organization for Scientific Research(NWO) by the European Joint Program Rare Diseases(grant agreement#825575)and ELIXIR-EXCELERATE(H2020-INFRADEV-1-2015-12) 

主　　题：Accessibility of health data FAIR metadata GDPR Data sharing ELSI 

摘      要：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 *** to the H2020 Program Guidelines on FAIR Data,data should beas open as possible and as closed as necessary,openin order to foster the reusability and to accelerate research,but at the same time they should beclosedto safeguard the privacy of the *** 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 *** 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 *** 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 ***,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.