Richard Boyd Barrett (Dún Laoghaire, People Before Profit Alliance)
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1001. To ask the Minister for Health to clarify the innovation and economic growth section of the National Strategy for Accelerating Genetic and Genomic Medicine in Ireland; whether she views the “diverse range of clinical disease characteristics” in Ireland as an opportunity for private profit-making; and if she will make a statement on the matter. [23193/25]

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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Expanding public infrastructure is a key component of the HSE National Genetics and Genomics Office’s strategic plan for implementing the National Strategy for Accelerating Genetic and Genomic Medicine in Ireland (2022). However, it is the pragmatic reality that private industry plays a key role in providing the mix of services that are required to ensure that the whole population of Ireland can avail of the potential offered by genetic and genomic medicine, not least in the case of rare diseases and cancers where timely and focused diagnostic services mean faster entry into care.

More widely, the potential for economic benefit from genomic medicine in Ireland for both the state and the public good, is dependent on the development, attraction, and retention of scientific talent. To support the recruitment, retention, education, and career development of the current and future genetics and genomics workforce the NGGO will develop a Strategic Workforce Plan in alignment with the broader HSE and DOH workforce plans.

Through the process of the Strategic Workforce Plan the national office will support how we identify, develop and attract a diverse workforce of genetic and genomic specialists, as well as strategic partnerships and collaborations to raise the profile of Ireland as a leader in genetics and genomics on the world stage. Genetic and genomic research and innovation will help to ensure the translation of new knowledge and advances in technology into improved patient outcomes. This will simultaneously drive economic growth through collaboration and partnership with academia and industry.

Richard Boyd Barrett (Dún Laoghaire, People Before Profit Alliance)
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1002. To ask the Minister for Health in light of reports that individuals’ genomic data may be at risk when private companies responsible for generating and storing the data are in distress (details supplied), the reason the National Strategy for Accelerating Genetic and Genomic Medicine in Ireland makes no reference to either retaining genomic services in public ownership or bringing private services into public ownership; and if she will make a statement on the matter. [23198/25]

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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The National Genetics and Genomics Office (NGGO) was established in 2023 under the governance of the HSE to provide oversight and a standardised approach to the delivery of the genetics and genomics service as outlined in the National Strategy for Accelerating Genetic and Genomic Medicine in Ireland.

A key priority within this is the establishment of a national genetic and genomic database that is robust and agile to adapt to future innovations and technological advances in genetics and genomics. The NGGO will review existing genetic and genomic data capacity and capability and work toward the establishment of a secure, scalable, and accessible data and analytical infrastructure to support clinical service delivery, bioinformatics, data access, and research. This national service will also fully comply with all applicable data protection standards and regulations.

My Department is fully committed to implementing the National Strategy for Accelerating Genetic and Genomic Medicine in Ireland and taking the required next steps to support the NGGO in delivering on this objective, both during 2025 and beyond.

Richard Boyd Barrett (Dún Laoghaire, People Before Profit Alliance)
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1003. To ask the Minister for Health in light of the National Strategy for Accelerating Genetic and Genomic Medicine’s commitment to building the genetics and genomics workforce for the future, for details of engagements with the Department of Further Higher Education, Research, Innovation and Science regarding raising PhD stipends in the life sciences to the living wage and granting PhD students employee status. [23199/25]

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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The HSE’s National Genetics and Genomics Office (NGGO) was established in 2023 to implement the National Strategy for Accelerating Genetic and Genomic Medicine in Ireland, and its activities have included work to identify and address the country’s genetic and genomic workforce needs, as well as implementation of overarching strategic plans to create a suitably resilient and future-proof service. In addition, my Department and the Department of Further & Higher Education, Research, Innovation & Science understand that the training of highly skilled and competent staff is also key to growing and strengthening the country’s genetic and genomic laboratory and research capacity.

Government policy is set out in Impact 2030; Ireland’s National Strategy for Research and Innovation. Talent is one of five pillars of the Impact 2030 Strategy, and the shared vision is that Ireland will be a global leader in nurturing, developing and retaining talent to drive research and innovation in our higher education and research system, enterprise, communities and public services.

In October 2022, the Department of Further & Higher Education, Research, Innovation & Science announced an independent review of PhD provision, the first time that a review of this nature had been undertaken. The independent Co-Chairs undertook a very comprehensive consultation process, meeting with over 35 stakeholder organisations, including an all-day (and in-person) workshop with student groups. In addition, over 750 written review submissions were received through an online process. The Co-Chairs’ deliberations on these consultations, coupled with extensive desk research (including a review of international practice) underpinned their analysis and findings. Their first review report was published in June 2023.

Among the recommendations of that review process was for an optimum stipend level €25,000, subject to funding availability. On 1 October 2024, additional funding was announced for Research Ireland in order to facilitate such an increase to €25,000. This in turn built on previously announced changes in preceding Budgets so that the cumulative result over a two year period amounted to an increase of over 31%. This is a clear demonstration of the Department of Further and Higher Education, Research, Innovation, and Science’s consistent focus and progress on this issue. It has come into effect from 1 January 2025. In doing so, that Department have now implemented the key recommendation of the independent review.

Of the approximately 10,000 PhD student enrolments annually in Ireland, in the region of 3,000 receive stipend awards from Research Ireland and approximately 1,000 do so from other public funders. Roughly 2,000 receive some level of institutional scholarship support from their host higher education institution, with the assistance of core funding from the Higher Education Authority. The remaining approximately 4,000 PhD students are privately funded, either by the individual or the employer.

The final review report, which will incorporate the Co-Chairs’ consideration of PhD researcher status, as well as issues particularly affecting under-represented groups, will be published in due course.