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

J 2022

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

GOVARTS, Eva, Liese GILLES, Stephanie BOPP, Petr HOLUB, Leslie MATALONGA et. al.

Základní údaje

Originální název

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

Autoři

Vydání

Environment International, OXFORD, PERGAMON-ELSEVIER SCIENCE LTD, 2022, 0160-4120

Další údaje

Jazyk

angličtina

Typ výsledku

Článek v odborném periodiku

Obor

10201 Computer sciences, information science, bioinformatics

Stát vydavatele

Kanada

Utajení

není předmětem státního či obchodního tajemství

Impakt faktor

Impact factor: 11.800

DOI

http://dx.doi.org/10.1016/j.envint.2022.107334

Změněno: 13. 6. 2022 10:11, doc. RNDr. Petr Holub, Ph.D.

Anotace

V originále

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.

Citovat

GOVARTS, Eva, Liese GILLES, Stephanie BOPP, Petr HOLUB, Leslie MATALONGA, Roel VERMEULEN, Martine VRIJHEID, Sergi BELTRAN, Mette HARTLEV, Sarah JONES, Laura Rodriguez MARTIN, Arnout STANDAERT, Morris A SWERTZ, Jan THEUNIS, Xenia TRIER, Nina VOGEL, Koert VAN ESPEN, Sylvie REMY a Greet SCHOETERS. Position paper on management of personal data in environment and health research in Europe. Environment International. OXFORD: PERGAMON-ELSEVIER SCIENCE LTD, 2022, roč. 165. ISSN 0160-4120. Dostupné z: https://dx.doi.org/10.1016/j.envint.2022.107334.

@article{1859960,
   author = {Govarts, Eva and Gilles, Liese and Bopp, Stephanie and Holub, Petr and Matalonga, Leslie and Vermeulen, Roel and Vrijheid, Martine and Beltran, Sergi and Hartlev, Mette and Jones, Sarah and Martin, Laura Rodriguez and Standaert, Arnout and Swertz, Morris A and Theunis, Jan and Trier, Xenia and Vogel, Nina and Van Espen, Koert and Remy, Sylvie and Schoeters, Greet},
   article_location = {OXFORD},
   doi = {http://dx.doi.org/10.1016/j.envint.2022.107334},
   language = {eng},
   issn = {0160-4120},
   journal = {Environment International},
   title = {Position paper on management of personal data in environment and health research in Europe},
   volume = {165},
   year = {2022}
}

TY  - JOUR
ID  - 1859960
AU  - Govarts, Eva - Gilles, Liese - Bopp, Stephanie - Holub, Petr - Matalonga, Leslie - Vermeulen, Roel - Vrijheid, Martine - Beltran, Sergi - Hartlev, Mette - Jones, Sarah - Martin, Laura Rodriguez - Standaert, Arnout - Swertz, Morris A - Theunis, Jan - Trier, Xenia - Vogel, Nina - Van Espen, Koert - Remy, Sylvie - Schoeters, Greet
PY  - 2022
TI  - Position paper on management of personal data in environment and health research in Europe
JF  - Environment International
VL  - 165
PB  - PERGAMON-ELSEVIER SCIENCE LTD
SN  - 01604120
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.
ER  -

GOVARTS, Eva, Liese GILLES, Stephanie BOPP, Petr HOLUB, Leslie MATALONGA, Roel VERMEULEN, Martine VRIJHEID, Sergi BELTRAN, Mette HARTLEV, Sarah JONES, Laura Rodriguez MARTIN, Arnout STANDAERT, Morris A SWERTZ, Jan THEUNIS, Xenia TRIER, Nina VOGEL, Koert VAN ESPEN, Sylvie REMY a Greet SCHOETERS. Position paper on management of personal data in environment and health research in Europe. \textit{Environment International}. OXFORD: PERGAMON-ELSEVIER SCIENCE LTD, 2022, roč.~165. ISSN~0160-4120. Dostupné z: https://dx.doi.org/10.1016/j.envint.2022.107334.

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