Published August 4, 2025
| Version v1
Conference paper
Open
Presentation of ELSA Working Group Data Protection
Authors/Creators
- 1. FIZ Karlsruhe – Leibniz Institute for Information Infrastructure, Germany
- 2. German Cancer Research Center (DKFZ), Germany
- 3. National Research Data Infrastructure (NFDI) e.V., Germany
- 4. University of Mannheim, Germany
- 5. GESIS Leibniz Institut für Sozialwissenschaften, Germany
Contributors
Editors:
- 1. Nationale Forschungsdateninfrastruktur (NFDI) e.V.
- 2. University of Amsterdam
Description
Alongside the consortia, the participants of the Sections are the core of the NFDI Association and collaborate on various relevant cross-disciplinary topics. The creation of a common basis for data protection within a national information infrastructure is one of the central NFDI goals as outlined in the federal-state agreement (§ 1(1) g) GWK 2016) [1], which serves as the foundation of the NFDI. The Working Group Data Protection makes a significant contribution to this NFDI goal by serving as a platform for exchange across disciplines. The Working Group originated as a Task Force with the goal of supporting researchers by developing practical guidelines on FAIR data management and data protection. This effort resulted in a factsheet series titled "FAIR principles and data protection: How can FAIR data management be reconciled with the General Data Protection Regulation?". Collaborating in sub-working groups, the volunteering participants developed the following focal points around the main topic: - Consent and FAIR - Methods for FAIR and data protection-compliant handling of personal data - Data Linkage – FAIR and data protection-compliant Illustrating the interplay between the FAIR framework and the privacy requirements in RDM, the factsheet series shows that the two are supplementing each other. Thus, with the help of these practical guidelines researchers can learn how to comply with both frameworks and use various tools and resources for self education. Currently, the factsheets are undergoing final reviews and will first be made available in German. English editions are in the planning stage. Following a reorganization, the Working Group is now focussing on exchanging perspectives, discussing emerging issues, and addressing topics directly relevant to the work within NFDI. Meetings take place bi-monthly. They begin with a Lean Coffee session, where participants share current challenges, experiences, and news. This is followed by a structured segment featuring a pre-selected presentation with discussion. The meeting concludes with a brief organizational wrap-up and the selection of the next session's topic. Participants bring in a wide array of expertise and questions to the Working Group, ranging from legal topics on data protection and AI law, to practical issues such as assessing anonymity or training needs on data protection within the consortia. As an example of a prepared session, the Working Group is discussing and supporting the efforts of colleagues, working on training sessions specifically tailored to research infrastructure teams with a focus on secure data handling, access controls, and privacy considerations. The training aims at providing actionable knowledge without overwhelming participants - and the Working Group discussion will also provide impulses for other NFDI colleagues facing similar issues. Thus, the new format ensures dynamic discussions, fosters knowledge-sharing, and keeps the group engaged with evolving data protection challenges. Based on emerging needs, the group will also remain open to producing training and education content on data protection related topics for researchers in collaboration with other NFDI Sections and groups. A FAIR data future requires a balance between the various areas of data protection, data sovereignty and data re-use, which the NFDI Working Group is addressing. [1] "Agreement between the Federal Government and the Länder concerning the Establishment and Funding of a National Research Data Infrastructure (NDFI) of 26 November 2018." Gemeinsame Wissenschaftskonferenz - GWK. https://www.gwk-bonn.de/fileadmin/Redaktion/Dokumente/Papers/NFDI.pdf (11/03/2025)
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