Dáil Éireann Debate, Tuesday - 13 June 2023
1300. Deputy Jennifer Murnane O'Connor asked the Minister for Health the status of the implementation of the National Strategy for Accelerating Genetics and Genomics Medicine in Ireland; the status of the development of the promised National Testing Directory for genetics and genomics; and if he will make a statement on the matter. [28413/23]
View answerIn 2023, I allocated €2.7 million to support the implementation of the National Strategy for Genetics and Genomics. Key priorities for the first-year implementation plan are as follows:
• to ensure that key front-line staff and National Office roles are recruited
• to operationalise a multi-stakeholder implementation steering group
• to progress Irish entry into 1+MG
• to progress a National Testing Directory for genetics and genomics
Recruitment
To accelerate the establishment of the National Office, interim appointments have been made for senior positions in the first instance. To date the following positions have been appointed to the National Office:
• An Interim National Director
• An Interim National Clinical Director
• An Interim National Clinical Laboratory Director
• An Interim National Bio-Informatics Director
• A Business Co-ordinator (Grade VI)
• A Communications Co-ordinator (Grade VI)
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 across the Health Regions in line with Sláintecare.
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. This work has been divided into the following four work streams:
1. The Genetics and Genomics Operating Model
2. Communications and Stakeholder Engagement
3. Testing and Guidance Directory
4. Data and Bioinformatics
These work streams will deliver key outputs associated with each area in the Strategy and report back to the Implementation Steering Group on progress.
Irish Entry into 1+MG
Ireland has been progressing its entry into Europe’s 1+MG initiative. In April 2023, the Department established a National Mirror Group to support the delivery of this work. In addition to progressing the 1+MG agenda in Ireland, this group is designed to harmonise efforts of complementary European initiatives that will support Ireland’s genetics and genomics ambitions. These include Ireland’s progress on the Genomic Data Infrastructure Project and the implementation of the European Health Data Space. Ireland has recently nominated experts identified by the National Mirror Group to participate in the 13 work streams associated with the 1+MG initiative. Areas covered by these work streams include: cancer, rare diseases, interoperability, pharmacogenomics, and legal frameworks.
National Testing Directory for Genetics and Genomics
Progression of a National Testing Directory of Genetics and Genomics is a key ambition of the first-year implementation plan and is currently being supported by one of the work streams of the Implementation Steering Group. After a successful submission to the Sláintecare Integration Innovation Fund, a call for the development of this Directory will be advertised in Q3.
