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

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, dat...

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Authors: Landi, Annalisa, Thompson, Mark, Giannuzzi, Viviana, Bonifazi, Fedele, Labastida i Juan, Ignasi, 1970-, Bonino da Silva Santos, Luiz Olavo, Roos, Marco
Format: article
Status:Published version
Publication Date:2020
Country:España
Institution:Varias* (Consorci de Biblioteques Universitáries de Catalunya, Centre de Serveis Científics i Acadèmics de Catalunya)
Repository:Recercat. Dipósit de la Recerca de Catalunya
OAI Identifier:oai:recercat.cat:2445/150584
Online Access:https://hdl.handle.net/2445/150584
Access Level:Open access
Keyword:Recerca
Accés obert
Dades de recerca
Research
Open access publishing
Research data
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spelling The 'A' of FAIR - As Open as Possible, as Closed as NecessaryLandi, AnnalisaThompson, MarkGiannuzzi, VivianaBonifazi, FedeleLabastida i Juan, Ignasi, 1970-Bonino da Silva Santos, Luiz OlavoRoos, MarcoRecercaAccés obertDades de recercaResearchOpen access publishingResearch dataIn 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 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 metadatacould facilitate data sharing while ensuring protection of individuals.The MIT Press2020202020202020info:eu-repo/semantics/articleinfo:eu-repo/semantics/publishedVersion9 p.application/pdfhttps://hdl.handle.net/2445/150584Articles publicats en revistes (CRAI-UB)reponame:Recercat. Dipósit de la Recerca de Catalunyainstname:Varias* (Consorci de Biblioteques Universitáries de Catalunya, Centre de Serveis Científics i Acadèmics de Catalunya)InglésReproducció del document publicat a: https://doi.org/10.1162/dint_a_00027Data Intelligence, 2020, vol. 2, num. 1, p. 47-55https://doi.org/10.1162/dint_a_00027info:eu-repo/grantAgreement/EC/H2020/825575cc-by (c) Landi, Annalisa et al., 2020http://creativecommons.org/licenses/by/3.0/esinfo:eu-repo/semantics/openAccessoai:recercat.cat:2445/1505842026-05-29T05:05:01Z
dc.title.none.fl_str_mv The 'A' of FAIR - As Open as Possible, as Closed as Necessary
title The 'A' of FAIR - As Open as Possible, as Closed as Necessary
spellingShingle The 'A' of FAIR - As Open as Possible, as Closed as Necessary
Landi, Annalisa
Recerca
Accés obert
Dades de recerca
Research
Open access publishing
Research data
title_short The 'A' of FAIR - As Open as Possible, as Closed as Necessary
title_full The 'A' of FAIR - As Open as Possible, as Closed as Necessary
title_fullStr The 'A' of FAIR - As Open as Possible, as Closed as Necessary
title_full_unstemmed The 'A' of FAIR - As Open as Possible, as Closed as Necessary
title_sort The 'A' of FAIR - As Open as Possible, as Closed as Necessary
dc.creator.none.fl_str_mv Landi, Annalisa
Thompson, Mark
Giannuzzi, Viviana
Bonifazi, Fedele
Labastida i Juan, Ignasi, 1970-
Bonino da Silva Santos, Luiz Olavo
Roos, Marco
author Landi, Annalisa
author_facet Landi, Annalisa
Thompson, Mark
Giannuzzi, Viviana
Bonifazi, Fedele
Labastida i Juan, Ignasi, 1970-
Bonino da Silva Santos, Luiz Olavo
Roos, Marco
author_role author
author2 Thompson, Mark
Giannuzzi, Viviana
Bonifazi, Fedele
Labastida i Juan, Ignasi, 1970-
Bonino da Silva Santos, Luiz Olavo
Roos, Marco
author2_role author
author
author
author
author
author
dc.subject.none.fl_str_mv Recerca
Accés obert
Dades de recerca
Research
Open access publishing
Research data
topic Recerca
Accés obert
Dades de recerca
Research
Open access publishing
Research data
description 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 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 metadatacould facilitate data sharing while ensuring protection of individuals.
publishDate 2020
dc.date.none.fl_str_mv 2020
2020
2020
2020
dc.type.none.fl_str_mv info:eu-repo/semantics/article
info:eu-repo/semantics/publishedVersion
format article
status_str publishedVersion
dc.identifier.none.fl_str_mv https://hdl.handle.net/2445/150584
url https://hdl.handle.net/2445/150584
dc.language.none.fl_str_mv Inglés
language_invalid_str_mv Inglés
dc.relation.none.fl_str_mv Reproducció del document publicat a: https://doi.org/10.1162/dint_a_00027
Data Intelligence, 2020, vol. 2, num. 1, p. 47-55
https://doi.org/10.1162/dint_a_00027
info:eu-repo/grantAgreement/EC/H2020/825575
dc.rights.none.fl_str_mv cc-by (c) Landi, Annalisa et al., 2020
http://creativecommons.org/licenses/by/3.0/es
info:eu-repo/semantics/openAccess
rights_invalid_str_mv cc-by (c) Landi, Annalisa et al., 2020
http://creativecommons.org/licenses/by/3.0/es
eu_rights_str_mv openAccess
dc.format.none.fl_str_mv 9 p.
application/pdf
dc.publisher.none.fl_str_mv The MIT Press
publisher.none.fl_str_mv The MIT Press
dc.source.none.fl_str_mv Articles publicats en revistes (CRAI-UB)
reponame:Recercat. Dipósit de la Recerca de Catalunya
instname:Varias* (Consorci de Biblioteques Universitáries de Catalunya, Centre de Serveis Científics i Acadèmics de Catalunya)
instname_str Varias* (Consorci de Biblioteques Universitáries de Catalunya, Centre de Serveis Científics i Acadèmics de Catalunya)
reponame_str Recercat. Dipósit de la Recerca de Catalunya
collection Recercat. Dipósit de la Recerca de Catalunya
repository.name.fl_str_mv
repository.mail.fl_str_mv
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score 15,811543

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