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EDPS support to independent research projects - Awarded Projects

AWARDED PROJECTS

Disclaimer

The support provided by the EDPS does not entail that the research project represents the official position of the EDPS. The authors remain fully responsible for their respective research projects and maintain the intellectual property and related rights of their publications.

Project 1) Study on Patient value in health data (re)use for oncology research, part of the Symphony of Us project

The Symphony of Us (SoU) is a transdisciplinary research project aimed at better understanding and implementing the concept of “Patient Value” in oncology research through various studies and initiatives. SoU is a collaboration between Ghent University, AP Hogeschool Antwerpen, and ULB, supported by the King Baudouin Foundation. The SoU Health data study aims to investigate patient value in the context of (re)use of health data, employing a qualitative approach (interviews with representatives of key stakeholders). The impact of the European Health Data Space and the role of the 8 guiding principles for caring technology, a novel framework for human-centred technology and data management will be assessed in this context.

Author: Teodora LALOVA-SPINKS - Teodora LALOVA-SPINKS is a postdoctoral researcher at the Faculty of Medicine and Health Sciences, Ghent University, Belgium. A lawyer by training, Teodora holds an interdisciplinary PhD in Pharmaceutical Sciences and Laws (2023, KU Leuven).

Status: Ongoing; the end date of the Symphony of Us project is 31 December 2025.

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Project 2) Untangling Digital Euro’s Personal Data Protection Challenges: An Exploration of Data Processing Activities and Latent Privacy Risks

This research examines the implications of the Digital Euro (DE) Proposal for the right to privacy and data protection, examining the characteristics, architecture, and complex relationships between the ECB, national central banks, service providers and intermediaries. To direct our research, we formulate the following research question: ‘How does the DE initiative address data protection and privacy issues following the principles, obligations, and rights in the EU data protection framework?’ The paper identifies and examines two principal challenges presented by the proposed DE in the context of data protection: unclear allocation of roles and responsibilities; balance between data minimisation and availability.

Authors: 

  • Andrés CHOMCZYK PENEDO - Andrés Chomczyk is a legal researcher at the Law, Science, Technology and Society (LSTS) research group of the Vrije Universiteit Brussel (VUB) and an academic fellow of the Brussels Privacy Hub (BPH). He has been a Marie Skłodowska-Curie Fellow in the PROTECT project.
  • Pablo Rodrigo TRIGO KRAMCSÁK - Pablo Trigo Kramcsák is a PhD researcher at the LSTS research group, funded by the “Becas Chile scholarship in digital transformation and technological revolution”, awarded by the Chilean National Research and Development Agency. He is also an affiliated researcher at the Centre for Information Technology Law of the University of Chile Law School.
  • Michaël VAN DEN POEL - Michaël Van den Poel is a Research Engineer at the Augmented Law Institute at the EDHEC Business School, where he is active in the Interdisciplinary Project on Privacy (IPoP). He is also a PhD student at LSTS, where he is also an executive team member within the BPH.
  • Alessandro ORTALDA - Alessandro Ortalda is the Managing Director of the Brussels Privacy Hub and a doctoral researcher at LSTS.

Status: finalised

More information: ''Untangling Digital Euro's Personal Data Protection Challenges: An Exploration of Data Processing Activities and Latent Privacy Risks'', ResearchGate, November 2024

Project 3) Group Privacy in the Age of AI: Rethinking Individual-Centric Data Protection

This research examines the European data protection framework, focusing on its individual-centric approach in the age of AI. As automated decision-making systems increasingly target groups, this study explores "group privacy" and argues for reforms to include group-based protections in the GDPR and AI Act. By analysing legal challenges and risks such as group discrimination, the research calls for legislative reform to address the collective nature of data subjects' rights in today's digital landscape.

Author: Liubomir NIKIFOROV - Liubomir Nikiforov is a PhD researcher in Law at Vrije Universiteit Brussel (VUB) and an Executive Team Member at the Brussels Privacy Hub. He specializes in data protection, privacy, and the legal implications of artificial intelligence.

Status: finalised

More information: ''Group Privacy in the Age of AI: Rethinking Individual-Centric Data Protection'', ResearchGate, October 2024

Project 4) Can the GDPR protect us from the AI Act? 

So-called 'AI' is a derivative of a surveillance business model allowing Big Tech to provide extrajudicial surveillance services for civil and military purposes. As such mass surveillance is banned, and the regulatory capture has produced the AI Act, under which fundamental rights can be violated with impunity as long as there is no foreseeable harm. Therefore, Big Tech's next target is any norm that still protects fundamental rights. The attacks on the GDPR are sneaky attacks on the fundamental rights that the GDPR protects, not attacks on the alleged obstacles that stifle innovation.

Author: Daniela TAFANI - Daniela Tafani is a fixed-term researcher of Political Philosophy at the University of Pisa. Her current research interests include Kant’s moral and political philosophy and the ethics and politics of artificial intelligence.  More about the Daniela here in Italian and English.

Status: completed

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