Hildegarde Naughton (Galway West, Fine Gael)

I thank Senator Murphy O'Mahony for facilitating this opportunity to discuss this issue. I am taking this Commencement matter on behalf of the Minister for Health, Jennifer Carroll MacNeill. I assure the Senator that developing a comprehensive national genetic and genomic testing service in Ireland is a key commitment for both the Department of Health and the HSE.

Despite having excellent personnel on the ground, our services face significant challenges across the system, whether that be waiting times to access specialist clinical genetics services or the need to send tests abroad to meet demand.

In 2022, the national strategy for accelerating genetic and genomic medicine was developed. Subsequently, the HSE established the national genetics and genomics office, NGGO, in 2023 to implement the national strategy. The NGGO is looking to address the challenges identified but, more widely, is responsible for co-ordinating a national approach to genetics and genomics. This includes supporting the development of a skilled genetic and genomic workforce, enhancing clinical services for patients and families and strengthening laboratory and data infrastructure to drive advances in genetic and genomic medicine services across the country.

The NGGO is making significant progress in the following key areas that will help underpin the development of a transformed and robust national genomic and genetic testing service. The development of a bioinformatics and genetic data infrastructure roadmap will be key towards informing how we deliver a national centre of excellence for genetic testing as envisaged by our national strategy. Establishing national infrastructure will be key to managing complex digital data arising from genetic testing and securing our patients' data nationally, which will also aid our international research partnerships, such as the 1+ Million Genomes project. There is the development of a national genomic test directory, promoting evidence-based, equitable and timely access to genetic and genomic tests. The first step in this journey was delivered earlier this year with the launch of a test directory for rare diseases. This directory will help guide clinicians to select the appropriate test for patients' clinical indications, reducing unnecessary testing and burden on the system. The test directory is under continuous development, and its next iteration is due in quarter 4 of this year, with further conditions being added over time. Development of an interim national genomic processing service, NGPS, later this year will provide business intelligence to enable national laboratory demand forecasting. Arrangements to finalise the location of the NGPS are under way, and the NGGO aims to have this service in place and running during quarter 4 of this year. Development of a communications plan for ongoing patient and public involvement, PPI, and stakeholder engagement and commencement of work for a strategic workforce plan for the genomic medicine service will add much-needed capacity to our genomics workforce.

All of the above will support our programme for Government 2025 objective of securing Ireland's future by combining a clinical and diagnostic service with a national genome database and making that data available for research leading to innovation and improvements in patient care. In doing so we will continue to take steps to ensure alignment with the HSE's Digital Health Strategic Implementation Roadmap and European health data space requirements; the Department of Health and the HSE's national cancer strategy up to 2026 and the laboratory services reform programme's outline strategic plan 2026-35; and the national rare disease strategy 2025-30.

Each advance made towards strategy implementation will improve the experience of patients and their families and builds on a firm commitment to ensure that patients benefit from the emerging science of genomics. I thank the Senator again for providing me the opportunity to speak here today.