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

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dc.contributor.authorGovarts, Eva
dc.contributor.authorGilles, Liese
dc.contributor.authorBopp, Stephanie
dc.contributor.authorVogel, Nina
dc.date.accessioned2024-06-16T13:10:42Z
dc.date.available2024-06-16T13:10:42Z
dc.date.issued2022
dc.description.abstractManagement 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. © 2022 The Authorsen
dc.format.extent1 Onlineresource (9 pages)
dc.format.mediumonline resource
dc.identifier.doihttps://doi.org/10.60810/openumwelt-1317
dc.identifier.urihttps://openumwelt.de/handle/123456789/2615
dc.language.isoeng
dc.rights.urihttp://rightsstatements.org/vocab/InC/1.0/
dc.subjectDatenschutz
dc.titlePosition paper on management of personal data in environment and health research in Europe
dc.typeWissenschaftlicher Artikel
dc.type.dcmitext
dc.type.mediumcomputer
dspace.entity.typePublication
local.bibliographicCitation.journalTitleEnvironment International
local.bibliographicCitation.originalDOI10.1016/j.envint.2022.107334
local.bibliographicCitation.volume165 (2022)
local.collectionAufsätze
local.contributor.authorId02160044
local.contributor.authorId02188181
local.contributor.authorId02181275
local.identifier.catalogId02492886
local.ingest.leader05899naa a2200000uu 4500
local.jointTitlePOSITION PAPER ON MANAGEMENT OF PERSONAL DATA IN ENVIRONMENT AND HEALTH RESEARCH IN EUROPE
local.reviewtrue
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local.source.urihttp://creativecommons.org/licenses/by-nc-nd/4.0/deed.de
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