Margaret Murphy O'Mahony (Fianna Fail)
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I thank the Minister of State, Deputy Naughton, for coming to the House to take this Commencement matter on the urgent need for the development of a comprehensive national genomic and genetic testing service which is publicly governed, clinically robust and capable of delivering timely and advanced diagnostics in areas such as oncology, rare diseases and inherited conditions.

We are at a critical juncture in Irish healthcare. The advances in personalised medicine, early detection and preventative care increasingly rely on genomic data, but Ireland, despite its world-class clinicians and ambitions in the life sciences sector, remains alarmingly behind when it comes to the local laboratory infrastructure. There is a deficit of suitably qualified people and facilities which are necessary to provide clinical genetic testing within our own public health system. At present, the majority of clinical genetic tests, including those for cancer and rare conditions, are sent abroad to laboratories in the UK, the US and across Europe. Concerns have been expressed that this is not just inefficient but risky. There are significant implications for patient safety, sample integrity, data privacy and health equity. Moreover, many public hospitals lack the accreditation and technological infrastructure to offer comprehensive genetic testing at scale. This results in long delays and inconsistent access, neither of which serve the interests of patients or clinicians.

While the establishment of the national genetics and genomics office was a welcome step, it must now be matched with real investment and action. We need a physical, nationally co-ordinated service that is resourced to deliver testing within Ireland to the highest clinical and ethical standards. One critical milestone in this regard was the anticipated appointment of an interim host for the national genomic processing service, which was due to take place by March of this year. That milestone has now been missed. When will this happen? Without clarity on timelines, we risk further delays to what is already an overdue reform. It is important to ensure that the design and roll-out of any national genomics service align with the principles of open competition and accessibility, allowing both public and commercial laboratories that meet appropriate clinical standards to participate. This approach not only supports value for money but also ensures equal access by all suitably accredited providers, helping to build a resilient and scalable testing infrastructure.

Patients and clinicians are waiting in the public system. Genetics counsellors are overstretched. Meanwhile, demand for genetic testing continues to rise, driven by developments in cancer care, prenatal screening and the growing understanding of rare conditions. This demand will only increase as we are in transition towards a model of care centred on early intervention and prevention. We have a moment here to act decisively to put in place a system that ensures equality of access to high-quality genomic testing for patients across the country. This requires full deployment of the service offering in accredited laboratories, public or commercial.

Will the Minister of State please update the House on the status of the national genomic processing service, tell us when a host for the national genomic processing service will be appointed and set out the Government's intentions for ensuring the deployment of appropriate accredited commercial laboratory services in Ireland in order to build this critical healthcare infrastructure capacity without further delay? This is not just a question of efficiency or modernisation; it is a test of our commitment to providing world-class detection, treatment and care for every patient in a timely and effective manner.

Hildegarde Naughton (Galway West, Fine Gael)
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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.

Margaret Murphy O'Mahony (Fianna Fail)
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I thank the Minister of State for the update. She will agree that it is a case of "a lot done, a lot more to do". I ask her to keep the House informed as we approach those deadlines and I thank her for her commitment.

Hildegarde Naughton (Galway West, Fine Gael)
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I will raise this issue again with the Minister for Health and tell her that this House would like to be updated on progress. Again, I reassure the Senator that the Department of Health is fully committed to supporting the NGGO as it works to implement the national strategy for accelerating genetic and genomic medicine. It is important to note that a transformation of the genetic and genomic medicine landscape in Ireland is a complex challenge but one we are facing head-on. Thanks to the NGGO's work to date, we have captured the scale of the problem and are now taking the steps to expand the system towards a robust, future-proofed genetic and genomics service that suits the needs of our growing population. The Department of Health, in collaboration with the HSE's NGGO, will continue to work with patient advocates and other stakeholders in the public and private sectors to transform the vision of a robust and future-proofed genetic and genomic medicine service and make sure that it becomes a reality.