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’ data principles sho...
| Main Authors: | , , , , , , , , , , , , , , , , , , |
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| Format: | Article |
| Language: | English |
| Published: |
Elsevier
2022-07-01
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| Series: | Environment International |
| Subjects: | |
| Online Access: | http://www.sciencedirect.com/science/article/pii/S0160412022002616 |
| _version_ | 1811245864983724032 |
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| author | 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_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_sort | Govarts Eva |
| collection | DOAJ |
| 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. |
| first_indexed | 2024-04-12T14:45:43Z |
| format | Article |
| id | doaj.art-f171d74ee63c4a14a6ea9b7feef8100a |
| institution | Directory Open Access Journal |
| issn | 0160-4120 |
| language | English |
| last_indexed | 2024-04-12T14:45:43Z |
| publishDate | 2022-07-01 |
| publisher | Elsevier |
| record_format | Article |
| series | Environment International |
| spelling | doaj.art-f171d74ee63c4a14a6ea9b7feef8100a2022-12-22T03:28:40ZengElsevierEnvironment International0160-41202022-07-01165107334Position paper on management of personal data in environment and health research in EuropeGovarts Eva0Gilles Liese1Bopp Stephanie2Holub Petr3Matalonga Leslie4Vermeulen Roel5Vrijheid Martine6Beltran Sergi7Hartlev Mette8Jones Sarah9Rodriguez Martin Laura10Standaert Arnout11Swertz Morris A.12Theunis Jan13Trier Xenia14Vogel Nina15Van Espen Koert16Remy Sylvie17Schoeters Greet18VITO Health, Flemish Institute for Technological Research (VITO), Mol, Belgium; Corresponding author at: VITO Health, Flemish Institute for Technological Research (VITO), Boeretang 200, 2400 Mol, Belgium.VITO Health, Flemish Institute for Technological Research (VITO), Mol, BelgiumEuropean Commission, Joint Research Centre (JRC), Ispra, ItalyBBMRI-ERIC, Graz, AustriaCNAG-CRG, Centre for Genomic Regulation (CRG), The Barcelona Institute of Science and Technology, Barcelona, SpainInstitute for Risk Assessment Sciences, Utrecht University, Utrecht, NetherlandsISGlobal, Barcelona, Spain; Spanish Consortium for Research on Epidemiology and Public Health (CIBERESP), Spain; Universitat Pompeu Fabra (UPF), Barcelona, SpainCNAG-CRG, Centre for Genomic Regulation (CRG), The Barcelona Institute of Science and Technology, Barcelona, Spain; Universitat Pompeu Fabra (UPF), Barcelona, Spain; Departament de Genètica, Microbiologia i Estadística, Facultat de Biologia, Universitat de Barcelona (UB), Barcelona, SpainFaculty of Law, University of Copenhagen, Copenhagen, DenmarkGÉANT, Glasgow, United KingdomVITO Health, Flemish Institute for Technological Research (VITO), Mol, BelgiumVITO Health, Flemish Institute for Technological Research (VITO), Mol, BelgiumDepartment of Genetics & Genomics Coordination Center, University of Groningen, University Medical Center Groningen, Groningen, the NetherlandsVITO Health, Flemish Institute for Technological Research (VITO), Mol, BelgiumEuropean Environment Agency (EEA), Copenhagen, DenmarkGerman Environment Agency (UBA), Berlin, GermanyApogado CVBA, Mechelen, BelgiumVITO Health, Flemish Institute for Technological Research (VITO), Mol, BelgiumVITO Health, Flemish Institute for Technological Research (VITO), Mol, Belgium; Department of Biomedical Sciences, University of Antwerp, Antwerp, BelgiumManagement 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.http://www.sciencedirect.com/science/article/pii/S0160412022002616Data protectionBiomonitoring dataHealth dataFAIR principlesGDPR |
| spellingShingle | 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 Position paper on management of personal data in environment and health research in Europe Environment International Data protection Biomonitoring data Health data FAIR principles GDPR |
| title | 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_short | 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 |
| topic | Data protection Biomonitoring data Health data FAIR principles GDPR |
| url | http://www.sciencedirect.com/science/article/pii/S0160412022002616 |
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