DAISY: A Data Information System for accountability under the General Data Protection Regulation
Regina Becker1, Pinar Alper1, Valentin Grouès1
1Luxembourg Centre for Systems Biomedicine, University of Luxembourg, Campus Belval 6, Avenue du Swing L-4367, Belvaux, Luxembourg.
Gigascience
|December 5, 2019
Summary
A new tool, DAISY, helps biomedical research institutions document data processing to comply with the General Data Protection Regulation (GDPR). This open-source software addresses the limitations of generic tools for complex, collaborative research data management.
Area of Science:
- Biomedical research
- Data management
- European data protection legislation
Background:
- The General Data Protection Regulation (GDPR) imposes strict documentation requirements for personal data processing.
- The GDPR's accountability principle necessitates robust record-keeping for research institutions and data hubs.
- Existing commercial data-mapping tools often lack the specificity required for the collaborative nature of biomedical research data flows.
Purpose of the Study:
- To develop a software tool that aids research institutions in complying with GDPR accountability requirements.
- To create a solution for mapping complex data flows within biomedical research projects.
- To address the shortcomings of generic data processing documentation tools in the context of scientific research.
Main Methods:
- Analysis of GDPR transparency and record-keeping obligations.
- Development of a specialized software tool tailored for biomedical research data.
- Implementation and active use of the tool in a research setting.
Main Results:
- The developed software tool effectively meets the GDPR accountability requirement.
- The tool successfully maps complex data flows in biomedical research.
- The tool addresses the specific needs of project-based, collaborative research data processing.
Conclusions:
- The GDPR necessitates dedicated tools and processes for research data management.
- The DAISY software offers a tailored solution for GDPR compliance in biomedical research.
- DAISY is freely available as an open-source tool and is actively used in practice.
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