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 

机构地区：[1]Fondazione per la Ricerca Farmacologica Gianni Benzi Onlus,30-70010 Valenzano(BA),Italy [2]Leiden University Medical Center,Leiden,2333 ZA,The Netherlands [3]Learning and Research Resources Centre(CRAI),Universitat de Barcelona,Catalunya 08007,Spain [4]GO FAIR International Support&Coordination Office(GFISCO),Leiden,The Netherlands

出　　处：《Data Intelligence》2020年第1期47-55,303,304,共11页数据智能（英文）

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).

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 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.

关 键 词：Accessibility of health data FAIR metadata GDPR Data sharing ELSI 

分 类 号：TP309[自动化与计算机技术—计算机系统结构]