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

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• dc.contributor.author Govarts, Eva
• dc.contributor.author Gilles, Liese
• dc.contributor.author Bopp, Stephanie
• dc.contributor.author Holub, Petr
• dc.contributor.author Matalonga, Leslie
• dc.contributor.author Vermeulen, Roel
• dc.contributor.author Vrijheid, Martine
• dc.contributor.author Beltran, Sergi
• dc.contributor.author Hartlev, Mette
• dc.contributor.author Jones, Sarah
• dc.contributor.author Rodriguez Martin, Laura
• dc.contributor.author Standaert, Arnout
• dc.contributor.author Swertz, Morris A.
• dc.contributor.author Theunis, Jan
• dc.contributor.author Trier, Xenia
• dc.contributor.author Vogel, Nina
• dc.contributor.author Van Espen, Koert
• dc.contributor.author Remy, Sylvie
• dc.contributor.author Schoeters, Greet
• dc.date.accessioned 2022-10-27T06:03:19Z
• dc.date.available 2022-10-27T06:03:19Z
• dc.date.issued 2022
• dc.description.abstract 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.
• dc.description.sponsorship 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).
• dc.format.mimetype application/pdf
• dc.identifier.citation Govarts E, Gilles L, Bopp S, Holub P, Matalonga L, Vermeulen R, Vrijheid M, Beltran S, Hartlev M, Jones S, Rodriguez Martin L, Standaert A, Swertz MA, Theunis J, Trier X, Vogel N, Van Espen K, Remy S, Schoeters G. Position paper on management of personal data in environment and health research in Europe. Environ Int. 2022 Jul;165:107334. DOI: 10.1016/j.envint.2022.107334
• dc.identifier.doi http://dx.doi.org/10.1016/j.envint.2022.107334
• dc.identifier.issn 0160-4120
• dc.identifier.uri http://hdl.handle.net/10230/54620
• dc.language.iso eng
• dc.publisher Elsevier
• dc.relation.ispartof Environ Int. 2022 Jul;165:107334
• dc.relation.projectID info:eu-repo/grantAgreement/EC/H2020/733032
• dc.relation.projectID info:eu-repo/grantAgreement/EC/H2020/824989
• dc.relation.projectID info:eu-repo/grantAgreement/EC/FP7/308333
• dc.relation.projectID info:eu-repo/grantAgreement/EC/H2020/874627
• dc.relation.projectID info:eu-repo/grantAgreement/EC/H2020/824087
• dc.relation.projectID info:eu-repo/grantAgreement/EC/H2020/779257
• dc.relation.projectID info:eu-repo/grantAgreement/EC/H2020/825575
• dc.rights © 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/).
• dc.rights.accessRights info:eu-repo/semantics/openAccess
• dc.rights.uri http://creativecommons.org/licenses/by-nc-nd/4.0/
• dc.subject.keyword Biomonitoring data
• dc.subject.keyword Data protection
• dc.subject.keyword FAIR principles
• dc.subject.keyword GDPR
• dc.subject.keyword Health data
• dc.title Position paper on management of personal data in environment and health research in Europe
• dc.type info:eu-repo/semantics/article
• dc.type.version info:eu-repo/semantics/publishedVersion