A Steering Group has been established to develop a National Genetic and Genomic Strategy. While the primary aim of this group is to set out a roadmap for the development of a high-performing genetics and genomics medical service, it provides an unprecedented opportunity to connect genomics healthcare services with the research and innovation community. Innovation in genomics is occurring across the globe and Ireland has a lot of international examples to draw from as we plot our path ahead. The FinnGen Project is one of these examples. It proves the valuable insights that can be gained from combining genome information with digital health care data. It is for this reason, we have sought input from international experts to inform our own Strategy.
Excellent research can only be achieved so long as the patient whose genomic data is being investigated is being protected and they are the forefront of the benefit of this work. We must continue to foster confidence by ensuring that patients and the public are giving full and clear consent. There are three other key developments underway that will help to shape and realise a way forward for Ireland.
1. The IPPOSI Citizens’ Jury on Future Use of Genomics, which began its deliberations earlier this month, will examine such areas as how genomic information can improve our health as individuals and as a society, to what extent we should support the increased use of genomics in our health care and health research, the challenges and opportunities that arise from doing so, and the safeguards that are needed to maximise progress while containing the risks. Its work is guided by an independent Oversight Panel, which includes public and patient representatives, the Health Research Board, clinicians, researchers, geneticists and regulatory experts. Genetic and genomic information belongs to people, and those people should have a say in how this information should be used in Ireland for health care and health research.
2. The current Health Research Board Strategy explicitly identifies the advancement of genomics research as a priority objective. Earlier this year, the HRB played a lead role in securing Ireland’s participation in a Digital Europe project to design, develop and implement a federated Genomics Data Infrastructure across Europe with the aim of ensuring that countries have the necessary data infrastructure in place to collect, store, manage, share, and analyse genomic datasets within and across EU Member states, in a secure, transparent and trusted manner. The project will allow authorised data users, such as clinicians and approved researchers, to advance our understanding of genomics for more precise and faster clinical decision-making, diagnostics, treatments and precision medicine. This project, which is co-funded by the HRB brings researchers, clinicians, patient representatives, clinical geneticists, data analysts and others together to develop a roadmap for such a data infrastructure in Ireland, with work on a roadmap beginning in earnest later this year.
3. Another key element for advancing genomics is access to biobanking infrastructure and support services. Fuelled by the COVID crisis, my Department made funding available for the first time to establish and maintain a national biobanking infrastructure to advance covid-19 research and innovation. This initiative, led by the Health Research Board, involves universities and hospitals across the country working together towards a common ambition, with an emphasis on international best practice, strong regulation and governance, and underpinned by principles of transparency and accessibility.
