On 28th March 2025, Professor Aisling McMahon (School of Law and Criminology & ALL Institute, Maynooth University), Professor Gianpiero Cavalleri, Royal College of Surgeons Ireland (RCSI), Dr Laura Whelan (RCSI), and Dr Ciara Staunton hosted a multi-disciplinary conference at the Royal College of Surgeons Dublin on “Enabling access to the use, re-use and sharing of health data for research in Ireland”.
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Timely access to the use, re-use, and sharing of health data for research is critical to improve individual and population health, ensuring better outcomes for current and future generations. Navigating such access, however, is fraught with legal, ethical, and societal complexities. These challenges are compounded given the evolving regulatory landscape, particularly with the coming into force of the European Health Data Space (EHDS), which aims to create a harmonised framework for data sharing across Europe. The EHDS will require implementation in each national Member State. Alongside the evolving legal landscape, governance frameworks for data sharing must consider and anticipate ethical, legal and societal considerations related to emerging technologies. The potential benefits of access to health and genetic data for health research are significant but can also pose ethical, legal and societal challenges. In this dynamic environment, such challenges need to be considered and addressed through nuanced, interdisciplinary dialogue.
Against this backdrop, this conference explored how a trustworthy data sharing ecosystem for health research could look in Ireland, one that enables accessibility while mitigating risks, fostering trust, and advancing health equity. Discussions on the day probed a range of issues including: current challenges in accessing, using, and sharing genetic and health data for research purposes in Ireland; the European Health Data Space (EHDS) and its implementation in Ireland; legal and ethical considerations surrounding data access, use, and sharing with industry partners and within public-private partnerships; and avenues for enabling responsible access, use, and sharing of genetic and health data in Ireland, which included consideration of case studies and approaches in other jurisdictions.
The conference was attended by approx. 100 people and featured timely discussions on the topic with leading national and international experts across a range of relevant fields, including, but not limited to, law, medicine, genomics and ethics.
You can find a summary of the conference in the
full conference summary report
Funding Acknowledgment: The organisers are very grateful to the Assisted Living and Learning (ALL) Institute, Maynooth University; School of Law and Criminology, Maynooth University; Royal Colleges of Surgeons Ireland and FutureNeuro for their support and funding in organising this conference.