Register now: HELT 2026 workshop on benefit sharing in the framework of the EHDS Regulation

HELT Symposium on EHDS regulation

The 4^th edition of the Health, Ethics, Law, and Technology Symposium (HELT 2026 Symposium) will be held on the topic of the EHDS Regulation: “EHDS Regulation, a Year On: From Vision to Reality”. This year’s agenda includes keynotes from experts affiliated with the European Commission, as well as various workshops under the theme of the symposium. The event is hosted by the Health & Ageing Law Lab (HALL) of Vrije Universiteit Brussel on 23 April 2026.

BBMRI.at co-organises a workshop

Similarly to last year’s edition, the BBMRI.at project will be represented at the event: BBMRI.at partner UNIVIE (University of Vienna), through the Department of Innovation and Digitalisation in Law, will be co-organising a workshop on the topic of benefit sharing within the framework of the Regulation, titled: “Who will benefit from the EHDS? Benefit sharing in the framework of the EHDS Regulation”.

The other workshop co-organisers are representatives from third party funded projects in the field of digital health in which UNIVIE is partner – eBRAIN-Health (Actionable Multilevel Health Data), PräNUDGE (Prävention durch Digitalisierung und Standardisierung von “self-reported data”) and Phase IV AI (Privacy Compliant Health Data As A Service For AI Development) – and which touch upon the EHDS Regulation and its implementation.

Benefit sharing within the EHDS – a biobank view

As the title suggests, the BBMRI.at-led workshop will focus on the issue of benefit sharing within the EHDS. This is a key outreach perspective because self-generated data (e.g. from digital health applications), data from biobanks and research institutions, and electronic health records will enter the EHDS largely through data altruism.

Representing BBMRI.at, Catarina Almeida, research associate at ID Law, will bring in the perspective from the biobanking field. Not all biobanks offer to communicate research results to donors – whether general findings or individual results, including incidental findings – resulting from research studies that use donated samples and data. The EHDS Regulation’s rules on reporting ‘significant findings’ are, therefore, relevant to biobank stakeholders, health data holders and users, as well as individuals, and will be a key topic at of the workshop.

The workshop will be an interactive discussion with participants on whether the EHDS Regulation sufficiently balances commercial interests, public interest, and individual rights, and how trustworthiness and digital literacy can be strengthened by legal and ethical measures.