{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,23]],"date-time":"2026-04-23T06:55:28Z","timestamp":1776927328079,"version":"3.51.2"},"reference-count":7,"publisher":"China Science Publishing & Media Ltd.","issue":"1-2","content-domain":{"domain":["www.mitpressjournals.org"],"crossmark-restriction":true},"short-container-title":["Data Intellegence"],"published-print":{"date-parts":[[2020,1]]},"abstract":"<jats:p> 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 \u201cas open as possible and as closed as necessary\u201d, \u201copen\u201d in order to foster the reusability and to accelerate research, but at the same time they should be \u201cclosed\u201d 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. <\/jats:p>","DOI":"10.1162\/dint_a_00027","type":"journal-article","created":{"date-parts":[[2019,11,1]],"date-time":"2019-11-01T20:43:34Z","timestamp":1572641014000},"page":"47-55","update-policy":"https:\/\/doi.org\/10.1162\/mitpressjournals.corrections.policy","source":"Crossref","is-referenced-by-count":69,"title":["The \u201cA\u201d of FAIR \u2013 As Open as Possible, as Closed                     as Necessary"],"prefix":"10.3724","volume":"2","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-9368-6424","authenticated-orcid":true,"given":"Annalisa","family":"Landi","sequence":"first","affiliation":[{"name":"Fondazione per la Ricerca Farmacologica Gianni Benzi Onlus, 30 \u2013                         70010 Valenzano (BA), Italy"}]},{"given":"Mark","family":"Thompson","sequence":"additional","affiliation":[{"name":"Leiden University Medical Center, Leiden, 2333 ZA, The Netherlands"}]},{"given":"Viviana","family":"Giannuzzi","sequence":"additional","affiliation":[{"name":"Fondazione per la Ricerca Farmacologica Gianni Benzi Onlus, 30 \u2013                         70010 Valenzano (BA), Italy"}]},{"given":"Fedele","family":"Bonifazi","sequence":"additional","affiliation":[{"name":"Fondazione per la Ricerca Farmacologica Gianni Benzi Onlus, 30 \u2013                         70010 Valenzano (BA), Italy"}]},{"given":"Ignasi","family":"Labastida","sequence":"additional","affiliation":[{"name":"Learning and Research Resources Centre (CRAI), Universitat de Barcelona,                         Catalunya 08007, Spain"}]},{"given":"Luiz Olavo Bonino","family":"da Silva Santos","sequence":"additional","affiliation":[{"name":"GO FAIR International Support & Coordination Office (GFISCO), Leiden, The Netherlands"}]},{"given":"Marco","family":"Roos","sequence":"additional","affiliation":[{"name":"Leiden University Medical Center, Leiden, 2333 ZA, The Netherlands"}]}],"member":"2026","reference":[{"key":"ref2","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pgen.1005772"},{"key":"ref3","doi-asserted-by":"publisher","DOI":"10.1136\/bmjopen-2017-018647"},{"key":"ref4","doi-asserted-by":"publisher","DOI":"10.1162\/dint_a_00028"},{"key":"ref6","doi-asserted-by":"publisher","DOI":"10.1162\/dint_a_00042"},{"key":"ref9","doi-asserted-by":"publisher","DOI":"10.1038\/s41525-018-0057-4"},{"key":"ref10","doi-asserted-by":"publisher","DOI":"10.12688\/f1000research.15161.1"},{"key":"ref14","first-page":"270","volume-title":"Enterprise Interoperability in the Digitized and Networked Factory of the Future","author":"Bonino da Silva Santos L.O.","year":"2016"}],"container-title":["Data Intelligence"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.mitpressjournals.org\/doi\/pdf\/10.1162\/dint_a_00027","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,3,14]],"date-time":"2025-03-14T07:42:05Z","timestamp":1741938125000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.sciengine.com\/doi\/10.1162\/dint_a_00027"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2020,1]]},"references-count":7,"journal-issue":{"issue":"1-2","published-print":{"date-parts":[[2020,1]]}},"alternative-id":["10.1162\/dint_a_00027"],"URL":"https:\/\/doi.org\/10.1162\/dint_a_00027","relation":{},"ISSN":["2641-435X"],"issn-type":[{"value":"2641-435X","type":"electronic"}],"subject":[],"published":{"date-parts":[[2020,1]]},"assertion":[{"value":"2020-01-31","order":3,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}