Retrospect on workshop on GDPR issues related to infectious disease research

15 November 2023

The BY-COVID project’s second Annual General Assembly took place in Barcelona on October 9-10. DANS co-organised the workshop ‘GDPR – common challenges when mobilising data’, aiming to gather experiences, challenges, and solutions to GDPR-related issues when mobilising data for infectious disease research. 

Workshop aims

The workshop aimed to contribute to a more in-depth understanding of the main challenges faced by the BY-COVID partners, in their associated fields, with respect to GDPR and privacy issues, including how they deal with these challenges. Infectious disease research often involves the collection of sensitive data, such as personal information regarding e.g. the health, demographics, and socio-economic status of individuals. Such data can provide crucial insights into infectious diseases and for preventing their spread, but must always be handled with caution, in compliance with GDPR regulations. The workshop was organised by DANS in collaboration with project partners from CESSDA and ELIXIR-Europe/SIB.


The workshop gathered participants from BY-COVID and relevant projects, to gather experiences, best practices, as well as challenges and solutions identified. The workshop featured a presentation by Emilie Kraaikamp (DANS) on ‘Health data for research – GDPR challenges’. The presentation provided an overview of how GDPR-related issues feature in the health data landscape, including issues surrounding secondary data use, barriers to international collaboration, and The European Health Data Space (EHDS) initiative. The workshop also featured the presentation ‘A short introduction to personal data in compliance with GDPR’ by Dimitra Kondyli (CESSDA/EKKE). 

Finally, the workshop featured a roundtable discussion where participants shared their own experiences. Common themes included: challenges and solutions around acquiring and managing consent; the difference between pseudonimisation vs anonymisation, and their GDPR implications; as well as different approaches to handling personal data and associated GDPR-issues in different countries and organisations. 

Join the BY-COVID Fest

The workshop paves the way for the ‘BY-COVID Fest‘, a training and knowledge-exchange event for data producers and users, aiming to ’empower data users and producers to become confident in how to submit or use sensitive data, express their questions and issues to professionals in their institutions, and find solutions for their sensitive data issues’. The event is set to take place in Athens on January 23-25, 2024, and is of particular interest for data producers and data users. Please find more information, and register your interest for the event here. 


BY-COVID aims to make data on COVID-19 and other infectious diseases from various disciplines available to the public, in order to improve European readiness for future pandemics. This three-year project involves 53 partners from 19 countries, and brings together stakeholders from a variety of different disciplines and backgrounds, including from the biomedical field, hospitals, public health, as well as the social sciences and humanities. DANS participates in the project as a member of CESSDA, the Consortium of European Social Science Data Archives. As such, DANS mainly contributes with expertise and resources related to the social sciences, in the BY-COVID Baseline Use Case, and in the training activities of the project (for more details on DANS’ involvement in BY-COVID, see this link).

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