DAISY: A Data Information System for accountability under the General Data Protection Regulation

• Published in: Gigascience Vol. 8; no. 12
• Main Authors: Becker, Regina, Alper, Pinar, Grouès, Valentin, Munoz, Sandrine, Jarosz, Yohan, Lebioda, Jacek, Rege, Kavita, Trefois, Christophe, Satagopam, Venkata, Schneider, Reinhard
• Format: Journal Article
• Language: English
• Published: United States Oxford University Press 01.12.2019
• Subjects: Accountability; Biomedical data; Biomedical research; Computer Security - legislation & jurisprudence; Data management; Data processing; Documentation; Electronic Health Records; Europe; Freeware; General Data Protection Regulation; Humans; Legislation; Medical research; Open source software; Principles; Research data management; Research facilities; Social Responsibility; Software; Technical Note; Europe; Luxembourg; GDPR; accountability; data mapping
• ISSN: 2047-217X; 2047-217X
• DOI: 10.1093/gigascience/giz140

Abstract Background 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. Findings 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. Conclusions 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.