Dáil Éireann Debate, Tuesday - 13 June 2023
1267. Deputy Colm Burke asked the Minister for Health if he will ring-fence funding for the implementation of the Genomic Strategy, to ensure that all child, adolescent and young adult (CAYA) patients aged between 16-25 years have access to genome sequencing; and if he will make a statement on the matter. [28254/23]
View answerThe Government and I are fully committed to improving genetics services in Ireland. One of the key ambitions the National Strategy for Accelerating Genetics and Genomics Medicine in Ireland, launched in December 2022, is to build a strong national genetics service. This will be a patient and family-centred service that can be accessed equitably across the country and across the lifespan of patients. The Strategy outlines a plan to achieve this ambition by improving the evidence-base and infrastructure supporting genetic testing in Ireland. This evidence base will ensure the allocation of resources is targeted on areas of the most significant need and support patient access across the Health Regions in line with the Sláintecare vision. While there are currently no plans to ring-fence funding for CAYA patients, the evidence base that is currently in development will inform any future funding decisions.
In 2023, I allocated €2.7 million to support the Strategy’s initial implementation. This funding was focused on the recruitment of key front-line staff and National Office roles and the operationalisation of a multi-stakeholder implementation steering group.
Recruitment of Front-line Staff
The allocation of front-line staff will be determined by an operating model for genetics and genomics. The Interim Director and Interim National Clinical Director will be responsible for progressing this. However, to address current demand, some front-line posts have been progressed ahead of the completion of this operating model. Recruitment for the following positions in currently underway:
• Consultant Clinical Geneticist at Galway University Hospital
• Genetic Counsellor at Galway University Hospital
• Genetic Counsellor at Children’s Health Ireland at Crumlin
• Genetic Counsellor at Beaumont Hospital
• Genetic Counsellor at St James/St Vincent’s
• 2 Genomic Resource Associates (Grave V) at Children’s Health Ireland at Crumlin
The operating model, once developed, will support equitable allocation of the remaining resources. Due to current demand, Children’s Health Ireland received 3 of the 7 roles initially appointed.
Implementation Steering Group
In April 2023, a Steering Group for the implementation of the Strategy was operationalised. Chaired by the Chief Clinical Officer, Colm Henry, this multi-stakeholder group is responsible for ensuring the effective delivery of the Strategy’s implementation. Representatives of this group include members of the National Office and Bioinformatics team, Department of Health representatives, clinicians, researchers, state agency representatives and patients. Improving the evidence based for future funding is a key priority for this group. Currently there are two significant developments underway that will support this work. The first is a national laboratory capacity review, which will inform future investment in laboratory capacity and the establishment of a National Bioinformatic Lab. Secondly, is the development of a National Testing Directory for Genetics and Genomics. This Directory will map current genetic tests conducted across Ireland and provide a more transparent process to referrals.
