Challenges of GDPR Compliance with the Data Altruism Concept Under the Data Governance Act: Lessons from the Estonian X-Road Model
By: Ana Koiava and Archil Chochia
References
- Kruesz, C., & Zopf, F. (2021). European Union ∙ The concept of data altruism of the draft DGA and the GDPR: Inconsistencies and why a regulatory sandbox model
- may facilitate data sharing in the EU. European Data Protection Law Review, 7(4), 569–579. https://doi.org/10.21552/edpl/2021/4/13.
- Skovgaard, L. L., Wadmann, S., & Hoeyer, K. (2019). A review of attitudes towards the reuse of health data among people in the European Union: The primacy of purpose and the common good. Health Policy, 123(6), 564–571. https://doi.org/10.1016/j.healthpol.2019.03.012.
- Bravo. (2022). Data Governance Act and Re-Use of Data in the Public Sector. European Review of Digital Administration & Law – Erdal, 3(2), 13–22.
- Carovano, G., & Finck, M. (2023). Regulating data intermediaries: The impact of the Data Governance Act on the EU’s data economy. https://doi.org/10.1016/j.clsr.2023.105830.
- De Sutter, E., Barbier, L., Borry, P., Geerts, D., Ioannidis, J. P. A., & Huys, I. (2024, January 1). Personalized and longitudinal electronic informed consent in clinical trials: How to move the needle? https://doi.org/10.1177/20552076231222361.
- Ferrè, G. R. (2023, April 26). Data donation and data altruism to face algorithmic bias for an inclusive digital healthcare. https://doi.org/10.15168/2284-4503-2624
- Finck, M., & Mueller, M.-S. (2023). Access to Data for Environmental Purposes: Setting the Scene and Evaluating Recent Changes in EU Data Law. Journal of Environmental Law, 35(1), 109–131. https://doi.org/10.1093/jel/eqad006.
- Garske, B., Holz, W., & Ekardt, F. (2024). Digital twins in sustainable transition: exploring the role of EU data governance. Frontiers in Research Metrics and Analytics, 9. https://doi.org/10.3389/frma.2024.1303024.
- Gefenas, E., Lekstutiene, J., Lukaseviciene, V., Hartlev, M., Mourby, M., & Cathaoir, K. Ó. (2021). Controversies between regulations of research ethics and protection of personal data: informed consent at a crossroad. Medicine, Health Care and Philosophy. https://doi.org/10.1007/s11019-021-10060-1.
- Grafenstein, M. (2022). Reconciling Conflicting Interests in Data through Data Governance. An Analytical Framework (and a Brief Discussion of the Data Governance Act Draft, the Data Act Draft, the AI Regulation Draft, as well as the GDPR). SSRN Electronic Journal. https://doi.org/10.2139/ssrn.4104502.
- Hoffmann, T. (2020). The Impact of Digital Autonomous Tools on Private Autonomy. Baltic Yearbook of International Law Online, 18, 18−31., Available at SSRN: https://ssrn.com/abstract=3771306.
- Jain, S., Spelliscy, C., Vance-Law, S., & Moore, S. (2023). AI and Democracy’s Digital Identity Crisis. SSRN Electronic Journal. https://doi.org/10.2139/ssrn.4593685.
- Kerikmäe, T., Pärn-Lee, E. Legal dilemmas of Estonian artificial intelligence strategy: in between of e-society and global race. AI & Soc 36, 561–572 (2021). https://doi.org/10.1007/s00146-020-01009-8.
- Laamech, N., Munier, M., & Pham, C. (2022). IdSM-O. Proceedings of the 14th International Conference on Management of Digital EcoSystems. https://doi.org/10.1145/3508397.3564825.
- Mikiver, M., & Tupay, P. K. (2023). Has the GDPR killed e-government? The “once-only” principle vs the principle of purpose limitation. https://doi.org/10.1093/idpl/ipad010.
- Mylly, U. M. (2024). Trade Secrets and the Data Act. IIC – International Review of Intellectual Property and Competition Law. https://doi.org/10.1007/s40319-024-01432-0.
- Paide, K., Pappel, I., Vainsalu, H., & Draheim, D. (2018). On the Systematic Exploitation of the Estonian Data Exchange Layer X-Road for Strengthening Public-Private Partnerships. Proceedings of the 11th International Conference on Theory and Practice of Electronic Governance. https://doi.org/10.1145/3209415.3209441.
- Pathak, M. (2024). Data Governance Redefined: The Evolution of EU Data Regulations from the GDPR to the DMA, DSA, DGA, Data Act and AI Act. Social Science Research Network. https://doi.org/10.2139/ssrn.4718891.
- Rivas Velarde, M. C., Lovis, C., Ienca, M., Samer, Caroline., & Hurst, S. (2024). Consent as a compositional act – a framework that provides clarity for the retention and use of data. Philosophy, Ethics, and Humanities in Medicine, 19(1). doi:10.1186/s13010-024-00152-0.
- Tropp, E. M., Hoffmann, T., & Chochia, A. (2022). Open Data: A Stepchild in e-Estonia’s Data Management Strategy? TalTech Journal of European Studies, 12(1), 123–144. https://doi.org/10.2478/bjes-2022-0006.
- Vardanyan, L., & Kocharyan, H. (2022). The GDPR and the DGA proposal: Are they in controversial relationship? European Studies, 9(1), 91–109. https://doi.org/10.2478/eustu-2022-0004.
- Von Grafenstein, M. (2021). Refining the Concept of the Right to Data Protection in Article 8 ECFR – Part II. European Data Protection Law Review, 7(2), 190–205. https://doi.org/10.21552/edpl/2021/2/8.
- Vukovic, J., Ivankovic, D., Habl, C., & Dimnjakovic, J. (2022). Enablers and barriers to the secondary use of health data in Europe: general data protection regulation perspective. Archives of Public Health, 80(1). https://doi.org/10.1186/s13690-022-00866-7.
- Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016 on the protection of natural persons with regard to the processing of personal data and on the free movement of such data, and repealing Directive 95/46/EC (General Data Protection Regulation) OJ L 119, 4.5.2016, p. 1–88.
- Regulation (EU) 2018/1807 of the European Parliament and of the Council of 14 November 2018 on a framework for the free flow of non-personal data in the European Union (Text with EEA relevance.) OJ L 303, 28.11.2018, p. 59–68.
- Regulation (EU) 2022/868 of the European Parliament and Council, of 30 May 2022 on European data governance and amending Regulation (EU) 2018/1724 (Data Governance Act), OJ L 152, 3.6.2022.
- A European strategy for data, Brussels, 19.2.2020 COM (2020) 66 final.
- European Data Governance Act, Retrieved from: https://digital-strategy.ec.europa.eu/en/policies/data-governance-act
- The European Data Act, retrieved from: https://www.eu-data-act.com/
DOI: https://doi.org/10.2478/bjlp-2025-0008 | Journal eISSN: 2029-0454
Language: English
Page range: 16 - 29
Submitted on: Nov 20, 2024
Accepted on: Jul 10, 2025
Published on: Oct 7, 2025
Published by: Faculty of Political Science and Diplomacy and the Faculty of Law of Vytautas Magnus University (Lithuania)
In partnership with: Paradigm Publishing Services
Publication frequency: 2 issues per year
Related subjects:
© 2025 Ana Koiava, Archil Chochia, published by Faculty of Political Science and Diplomacy and the Faculty of Law of Vytautas Magnus University (Lithuania)
This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 License.