Position paper on management of personal data in environment and health research in Europe
Publikation: Bidrag til tidsskrift › Tidsskriftartikel › Forskning › fagfællebedømt
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Position paper on management of personal data in environment and health research in Europe. / Eva, Govarts; Liese, Gilles; Stephanie, Bopp; Petr, Holub; Leslie, Matalonga; Roel, Vermeulen; Martine, Vrijheid; Sergi, Beltran; Mette, Hartlev; Sarah, Jones; Laura, Rodriguez Martin; Arnout, Standaert; Morris, Swertz A.; Jan, Theunis; Xenia, Trier; Nina, Vogel; Koert, Van Espen; Sylvie, Remy; Greet, Schoeters.
I: Environment International, Bind 165, 107334, 2022.Publikation: Bidrag til tidsskrift › Tidsskriftartikel › Forskning › fagfællebedømt
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TY - JOUR
T1 - Position paper on management of personal data in environment and health research in Europe
AU - Eva, Govarts
AU - Liese, Gilles
AU - Stephanie, Bopp
AU - Petr, Holub
AU - Leslie, Matalonga
AU - Roel, Vermeulen
AU - Martine, Vrijheid
AU - Sergi, Beltran
AU - Mette, Hartlev
AU - Sarah, Jones
AU - Laura, Rodriguez Martin
AU - Arnout, Standaert
AU - Morris, Swertz A.
AU - Jan, Theunis
AU - Xenia, Trier
AU - Nina, Vogel
AU - Koert, Van Espen
AU - Sylvie, Remy
AU - Greet, Schoeters
PY - 2022
Y1 - 2022
N2 - 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.
AB - 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.
KW - Data protection
KW - Biomonitoring data
KW - Health data
KW - FAIR principles
KW - GDPR
KW - PRENATAL EXPOSURE
KW - BIRTH
KW - METAANALYSIS
KW - PROJECT
KW - WEIGHT
U2 - 10.1016/j.envint.2022.107334
DO - 10.1016/j.envint.2022.107334
M3 - Journal article
C2 - 35696847
VL - 165
JO - Environment international
JF - Environment international
SN - 0160-4120
M1 - 107334
ER -
ID: 317368416