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 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 Environmental Health research (E&H). 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.

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;  THEUNIS Jan;  TRIER Xenia;  VOGEL Nina;  VAN ESPEN Koert;  REMY Sylvie;  SCHOETERS Greet; 

2022-07-19

PERGAMON-ELSEVIER SCIENCE LTD

JRC128116

0160-4120 (online),   

https://www.sciencedirect.com/science/article/pii/S0160412022002616,    https://publications.jrc.ec.europa.eu/repository/handle/JRC128116,   

10.1016/j.envint.2022.107334 (online),