Article (Scientific journals)
DAISY: A Data Information System for accountability under the General Data Protection Regulation
Becker, Regina; Alper, Pinar; Groues, Valentin et al.
2019In GigaScience, 8 (12)
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Keywords :
gdpr; data management; information systems
Abstract :
[en] The new European legislation on data protection, namely, the General Data Protection Regulation (GDPR), has introduced comprehensive requirements for the documentation about the processing of personal data as well as informing the data subjects of its use. GDPR’s accountability principle requires institutions, projects, and data hubs to document their data processings and demonstrate compliance with the GDPR. In response to this requirement, we see the emergence of commercial data-mapping tools, and institutions creating GDPR data register with such tools. One shortcoming of this approach is the genericity of tools, and their process-based model not capturing the project-based, collaborative nature of data processing in biomedical research.We have developed a software tool to allow research institutions to comply with the GDPR accountability requirement and map the sometimes very complex data flows in biomedical research. By analysing the transparency and record-keeping obligations of each GDPR principle, we observe that our tool effectively meets the accountability requirement.The GDPR is bringing data protection to center stage in research data management, necessitating dedicated tools, personnel, and processes. Our tool, DAISY, is tailored specifically for biomedical research and can help institutions in tackling the documentation challenge brought about by the GDPR. DAISY is made available as a free and open source tool on Github. DAISY is actively being used at the Luxembourg Centre for Systems Biomedicine and the ELIXIR-Luxembourg data hub.
Disciplines :
Life sciences: Multidisciplinary, general & others
Author, co-author :
Becker, Regina  ;  University of Luxembourg > Luxembourg Centre for Systems Biomedicine (LCSB)
Alper, Pinar  ;  University of Luxembourg > Luxembourg Centre for Systems Biomedicine (LCSB)
Groues, Valentin  ;  University of Luxembourg > Luxembourg Centre for Systems Biomedicine (LCSB)
Munoz, Sandrine ;  University of Luxembourg > Central Administration
Jarosz, Yohan ;  University of Luxembourg > Luxembourg Centre for Systems Biomedicine (LCSB)
Lebioda, Jacek ;  University of Luxembourg > Luxembourg Centre for Systems Biomedicine (LCSB)
Rege, Kavita ;  University of Luxembourg > Luxembourg Centre for Systems Biomedicine (LCSB)
Trefois, Christophe ;  University of Luxembourg > Luxembourg Centre for Systems Biomedicine (LCSB)
Satagopam, Venkata ;  University of Luxembourg > Luxembourg Centre for Systems Biomedicine (LCSB)
Schneider, Reinhard ;  University of Luxembourg > Luxembourg Centre for Systems Biomedicine (LCSB)
 These authors have contributed equally to this work.
External co-authors :
no
Language :
English
Title :
DAISY: A Data Information System for accountability under the General Data Protection Regulation
Publication date :
04 December 2019
Journal title :
GigaScience
ISSN :
2047-217X
Publisher :
BioMed Central, United Kingdom
Volume :
8
Issue :
12
Peer reviewed :
Peer Reviewed verified by ORBi
Focus Area :
Law / European Law
Systems Biomedicine
Available on ORBilu :
since 10 January 2020

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