Dáil Éireann Debate, Thursday - 15 February 2024
334. Deputy Richard O'Donoghue asked the Minister for Health if his attention has been drawn to the lack of genetic services throughout the country, that due to the lack of services people living with rare diseases are on waiting lists for the incorrect treatments; if additional funding will be provided for this service; and if he will make a statement on the matter. [7213/24]
View answerThe Government and I are fully committed to improving genetics services in Ireland. One of the key ambitions of the National Strategy for Accelerating Genetic and Genomic Medicine in Ireland is to build a strong patient and family-centred national genetics service that can be accessed equitably across the country and lifespan of patients. In 2023, the Government allocated €2.7 million to the implementation of this Strategy which included the establishment of a National Office of Genetics and Genomics and the allocation of front-line staff across the HSE Health Regions in areas of immediate need.
Last year, the following genetics/genomics posts were allocated:
• 1 genetic counsellor to each of the following locations:
• CHI Crumlin
• HSE Dublin and North-East - Beaumont Hospital
• HSE West and North-West - Galway University Hospital
• HSE Dublin and Midlands and HSE Dublin and South-East - St. James Hospital / St. Vincent’s University Hospital
• HSE South-West – via post allocated to CHI to deliver clinical services in Cork
• HSE Mid-West – via post allocated to CHI to deliver clinical services in Limerick
• 1 Consultant Clinical Geneticist to each of the following locations:
• HSE West and North-West - Galway University Hospital
• HSE Mid-West – via post allocated to CHI
• 2 Genomic Resource Associates to CHI Crumlin.
Recruitment through the strategy will be ongoing during its implementation phase, and beyond. Some of the posts approved in 2023 were affected by the extension of the temporary pause on the application process for new and replacement posts at all grades of Management and Administration, effective from 4 October 2023 as directed by the HSE Chief Executive Officer.
A priority for 2024 is the development of a robust National Genetics and Genomics Workforce Plan to support the recruitment, retention, education and career development of specialised roles. As part of this, a workforce planning analysis will take place. This will include genetic counsellors and the development of the Genomic Resource Associate (GRA) roles to support patients to navigate the genetic and genomic care pathway and improve coordination of care.
The development of a National Genomic Test Directory for Rare and Inherited Diseases is another priority deliverable for 2024. This Directory will support the delivery of equitable national genetics and genomics services, including clinical genetics services, genomics laboratory capabilities and associated bioinformatics. The Directory will map the current genetic tests conducted across Ireland and provide a more transparent process for referrals. This will be a key development in improving national genetic testing and ultimately helping to reduce wait time.
