Position paper on management of personal data in environment and health research in Europe

Management of datasets that include health information and other sensitive personal information of European study participants has to be compliant with the General Data Protection Regulation (GDPR, Regulation (EU) 2016/679). Within scientific research, the widely subscribed'FAIR' d...

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Autores: Govarts, Eva, Gilles, Liese, Bopp, Stephanie, Holub, Petr, Matalonga, Leslie, Vermeulen, Roel, Vrijheid, Martine, Beltran, Sergi, Hartlev, Mette, Jones, Sarah, Rodriguez Martin, Laura, Standaert, Arnout, Swertz, Morris A., Theunis, Jan, Trier, Xenia, Vogel, Nina, Van Espen, Koert, Remy, Sylvie, Schoeters, Greet
Formato: artículo
Estado:Versión publicada
Fecha de publicación:2022
País:España
Recursos:Varias* (Consorci de Biblioteques Universitáries de Catalunya, Centre de Serveis Científics i Acadèmics de Catalunya)
Repositorio:Recercat. Dipósit de la Recerca de Catalunya
OAI Identifier:oai:recercat.cat:10230/54620
Acesso em linha:http://hdl.handle.net/10230/54620
http://dx.doi.org/10.1016/j.envint.2022.107334
Access Level:acceso abierto
Palavra-chave:Biomonitoring data
Data protection
FAIR principles
GDPR
Health data
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dc.title.none.fl_str_mv Position paper on management of personal data in environment and health research in Europe
title Position paper on management of personal data in environment and health research in Europe
spellingShingle Position paper on management of personal data in environment and health research in Europe
Govarts, Eva
Biomonitoring data
Data protection
FAIR principles
GDPR
Health data
title_short Position paper on management of personal data in environment and health research in Europe
title_full Position paper on management of personal data in environment and health research in Europe
title_fullStr Position paper on management of personal data in environment and health research in Europe
title_full_unstemmed Position paper on management of personal data in environment and health research in Europe
title_sort Position paper on management of personal data in environment and health research in Europe
dc.creator.none.fl_str_mv Govarts, Eva
Gilles, Liese
Bopp, Stephanie
Holub, Petr
Matalonga, Leslie
Vermeulen, Roel
Vrijheid, Martine
Beltran, Sergi
Hartlev, Mette
Jones, Sarah
Rodriguez Martin, Laura
Standaert, Arnout
Swertz, Morris A.
Theunis, Jan
Trier, Xenia
Vogel, Nina
Van Espen, Koert
Remy, Sylvie
Schoeters, Greet
author Govarts, Eva
author_facet Govarts, Eva
Gilles, Liese
Bopp, Stephanie
Holub, Petr
Matalonga, Leslie
Vermeulen, Roel
Vrijheid, Martine
Beltran, Sergi
Hartlev, Mette
Jones, Sarah
Rodriguez Martin, Laura
Standaert, Arnout
Swertz, Morris A.
Theunis, Jan
Trier, Xenia
Vogel, Nina
Van Espen, Koert
Remy, Sylvie
Schoeters, Greet
author_role author
author2 Gilles, Liese
Bopp, Stephanie
Holub, Petr
Matalonga, Leslie
Vermeulen, Roel
Vrijheid, Martine
Beltran, Sergi
Hartlev, Mette
Jones, Sarah
Rodriguez Martin, Laura
Standaert, Arnout
Swertz, Morris A.
Theunis, Jan
Trier, Xenia
Vogel, Nina
Van Espen, Koert
Remy, Sylvie
Schoeters, Greet
author2_role author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
dc.subject.none.fl_str_mv Biomonitoring data
Data protection
FAIR principles
GDPR
Health data
topic Biomonitoring data
Data protection
FAIR principles
GDPR
Health data
description Management of datasets that include health information and other sensitive personal information of European study participants has to be compliant with the General Data Protection Regulation (GDPR, Regulation (EU) 2016/679). Within scientific research, the widely subscribed'FAIR' data principles should apply, meaning that research data should be findable, accessible, interoperable and re-usable. Balancing the aim of open science driven FAIR data management with GDPR compliant personal data protection safeguards is now a common challenge for many research projects dealing with (sensitive) personal data. In December 2020 a workshop was held with representatives of several large EU research consortia and of the European Commission to reflect on how to apply the FAIR data principles for environment and health research (E&H). Several recent data intensive EU funded E&H research projects face this challenge and work intensively towards developing solutions to access, exchange, store, handle, share, process and use such sensitive personal data, with the aim to support European and transnational collaborations. As a result, several recommendations, opportunities and current limitations were formulated. New technical developments such as federated data management and analysis systems, machine learning together with advanced search software, harmonized ontologies and data quality standards should in principle facilitate the FAIRification of data. To address ethical, legal, political and financial obstacles to the wider re-use of data for research purposes, both specific expertise and underpinning infrastructure are needed. There is a need for the E&H research data to find their place in the European Open Science Cloud. Communities using health and population data, environmental data and other publicly available data have to interconnect and synergize. To maximize the use and re-use of environment and health data, a dedicated supporting European infrastructure effort, such as the EIRENE research infrastructure within the ESFRI roadmap 2021, is needed that would interact with existing infrastructures.
publishDate 2022
dc.date.none.fl_str_mv 2022
2022
2022
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 http://hdl.handle.net/10230/54620
http://dx.doi.org/10.1016/j.envint.2022.107334
url http://hdl.handle.net/10230/54620
http://dx.doi.org/10.1016/j.envint.2022.107334
dc.language.none.fl_str_mv Inglés
language_invalid_str_mv Inglés
dc.relation.none.fl_str_mv Environ Int. 2022 Jul;165:107334
info:eu-repo/grantAgreement/EC/H2020/733032
info:eu-repo/grantAgreement/EC/H2020/824989
info:eu-repo/grantAgreement/EC/FP7/308333
info:eu-repo/grantAgreement/EC/H2020/874627
info:eu-repo/grantAgreement/EC/H2020/824087
info:eu-repo/grantAgreement/EC/H2020/779257
info:eu-repo/grantAgreement/EC/H2020/825575
dc.rights.none.fl_str_mv http://creativecommons.org/licenses/by-nc-nd/4.0/
info:eu-repo/semantics/openAccess
rights_invalid_str_mv http://creativecommons.org/licenses/by-nc-nd/4.0/
eu_rights_str_mv openAccess
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dc.publisher.none.fl_str_mv Elsevier
publisher.none.fl_str_mv Elsevier
dc.source.none.fl_str_mv 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
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spelling Position paper on management of personal data in environment and health research in EuropeGovarts, EvaGilles, LieseBopp, StephanieHolub, PetrMatalonga, LeslieVermeulen, RoelVrijheid, MartineBeltran, SergiHartlev, MetteJones, SarahRodriguez Martin, LauraStandaert, ArnoutSwertz, Morris A.Theunis, JanTrier, XeniaVogel, NinaVan Espen, KoertRemy, SylvieSchoeters, GreetBiomonitoring dataData protectionFAIR principlesGDPRHealth dataManagement of datasets that include health information and other sensitive personal information of European study participants has to be compliant with the General Data Protection Regulation (GDPR, Regulation (EU) 2016/679). Within scientific research, the widely subscribed'FAIR' data principles should apply, meaning that research data should be findable, accessible, interoperable and re-usable. Balancing the aim of open science driven FAIR data management with GDPR compliant personal data protection safeguards is now a common challenge for many research projects dealing with (sensitive) personal data. In December 2020 a workshop was held with representatives of several large EU research consortia and of the European Commission to reflect on how to apply the FAIR data principles for environment and health research (E&H). Several recent data intensive EU funded E&H research projects face this challenge and work intensively towards developing solutions to access, exchange, store, handle, share, process and use such sensitive personal data, with the aim to support European and transnational collaborations. As a result, several recommendations, opportunities and current limitations were formulated. New technical developments such as federated data management and analysis systems, machine learning together with advanced search software, harmonized ontologies and data quality standards should in principle facilitate the FAIRification of data. To address ethical, legal, political and financial obstacles to the wider re-use of data for research purposes, both specific expertise and underpinning infrastructure are needed. There is a need for the E&H research data to find their place in the European Open Science Cloud. Communities using health and population data, environmental data and other publicly available data have to interconnect and synergize. To maximize the use and re-use of environment and health data, a dedicated supporting European infrastructure effort, such as the EIRENE research infrastructure within the ESFRI roadmap 2021, is needed that would interact with existing infrastructures.HBM4EU is co-financed under Horizon 2020 (grant agreement No 733032). EUCAN-Connect is funded by the European Commission within the call topic SC1-BHC-05-2018: “International flagship collaboration with Canada for human data storage, integration and sharing to enable personalized medicine approaches” (Grant Agreement No 824989). The Canadian project partners have been funded by the Canadian Institutes of Health Research (CIHR) and the Fonds de recherche du Québec – Santé. The LifeCycle project received funding from the European Union’s Horizon 2020 research and innovation programme (Grant Agreement No. 733206 LifeCycle). The HELIX project received funding from the European Community’s Seventh Framework Programme (grant agreement no 308333 HELIX). ISGlobal acknowledges support from the Spanish Ministry of Science and Innovation through the “Centro de Excelencia Severo Ochoa 2019-2023” Program (CEX2018-000806-S), and support from the Generalitat de Catalunya through the CERCA Program. Roel Vermeulen is supported by EXPOSOME-NL and EXPANSE. EXPOSOME-NL is funded through the Gravitation program of the Dutch Ministry of Education, Culture, and Science and the Netherlands Organization for Scientific Research (NWO grant number 024.004.017). EXPANSE has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 874627. EOSC-Life project supported by EU Horizon 2020, grant agreement no. 824087. EJP-RD and Solve-RD projects have been financed under Horizon 2000 (grant numbers H2020 779257 and H2020 825575).Elsevier202220222022info:eu-repo/semantics/articleinfo:eu-repo/semantics/publishedVersionapplication/pdfapplication/pdfhttp://hdl.handle.net/10230/54620http://dx.doi.org/10.1016/j.envint.2022.107334reponame:Recercat. Dipósit de la Recerca de Catalunyainstname:Varias* (Consorci de Biblioteques Universitáries de Catalunya, Centre de Serveis Científics i Acadèmics de Catalunya)InglésEnviron Int. 2022 Jul;165:107334info:eu-repo/grantAgreement/EC/H2020/733032info:eu-repo/grantAgreement/EC/H2020/824989info:eu-repo/grantAgreement/EC/FP7/308333info:eu-repo/grantAgreement/EC/H2020/874627info:eu-repo/grantAgreement/EC/H2020/824087info:eu-repo/grantAgreement/EC/H2020/779257info:eu-repo/grantAgreement/EC/H2020/825575© 2022 The Authors. Published by Elsevier Ltd. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).http://creativecommons.org/licenses/by-nc-nd/4.0/info:eu-repo/semantics/openAccessoai:recercat.cat:10230/546202026-05-29T05:05:01Z
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