HRB supports Genomic Data Infrastructure (GDI) in Ireland
The HRB is investing €400,000 to co-fund Irish participation in a €40m Federated European infrastructure for genomics data under the Digital Europe Programme.
3 min read - 17 Nov 2022
Commenting on the announcement, Dr Mairead O’Driscoll, Chief Executive of the Health Research Board, said:
“The GDI project brings together national agencies, research organisations, technology providers and patient organisations in 20 countries. The overarching goal is to design, develop and operationalise a cross-border federated network of national genome collections and other relevant data to advance data-driven personalised medicine for the benefit of European citizens.
“Ireland’s participation in this project will see our researchers, clinicians, patient representatives, experts in data governance, data analysts and others collaborating on a roadmap for data infrastructure in Ireland and conducting proof-of-concept work using synthetic data.”
The project is designed to support the European 1+ Million Genomes (1+MG) Initiative, which is driving the development, deployment, and operation of sustainable data-access infrastructures across the EU.
The vision is that authorised data users such as clinicians, researchers and innovators will be able to advance our understanding of genomics for better and faster clinical decision-making, diagnostics, treatments and predictive medicine, and for improved public health measures that will benefit citizens, healthcare systems and the economy.
Dr Teresa Maguire, Director of Research Strategy and Funding at the HRB, said:
“We live in an era where genomics is increasingly important globally. From cancer to rare diseases to neurological diseases, it holds great promise to develop better diagnostics and more targeted personalised medicines, therapies and interventions. The HRB has a lead role in supporting the advancement of genomic research and in seeking to ensure that the data generated is best used and to maximum public benefit.
“Creating a data infrastructure for genomic and clinical data is critical to this, but it is a complex and a collaborative task. This project can act as a catalyst to join key stakeholders nationally, who can in turn connect with and learn from other countries in Europe. The project team will work closely with the Health Service Executive, where work is at an advanced stage to develop Ireland’s first National Strategy in Genetics and Genomics.
“Also, public and patient involvement will be critical to the success of this project. Ireland must adopt an approach to data access that balances patients’ increasing willingness to participate in genomics research with their legitimate concerns about consent, privacy, equitable access and other important matters.”
ENDS
Personalised Medicine in Ireland is the theme of the HRB National Conference 2022. This takes place on 30 November 2022 at the Radisson Blu Royal Hotel, Golden Lane, Dublin 8. Registration is free and places are available to the public and media.
NOTES TO EDITORS
Professor Gianpiero Cavalleri, (RCSI University of Medicine and Health Sciences and SFI FutureNeuro Research Centre) and Professor Denis Shields, (University College Dublin), are Co-Directors of the GDI project, with Professor Aedín Culhane (University of Limerick) and Professor Markus Helfert (Maynooth University) as Co-applicants. An IE-GDI Governance Group has been established to provide effective, accountable and transparent governance on the project. The HRB will invest €400,000 over four years in the GDI project, with co-funding from the Digital Europe programme that brings the total investment to €623,000 for the Irish arm of the GDI project, out of a total €40m investment.
Further information is available from the European Genomic Data Infrastructure website and press release and the RCSI University of Medicine and Health Sciences news story.
3 min read - 17 Nov 2022