Written answers
Tuesday, 23 July 2024
Department of Health
Health Strategies
Duncan Smith (Dublin Fingal, Labour)
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2502.To ask the Minister for Health the status of the national strategy for accelerating genetic and genomic medicine in Ireland; the additional resources he has committed to this; the plans in place to ensure timely access to genetic evaluation, counselling, testing and risk reduction; and if he will make a statement on the matter. [33319/24]
Stephen Donnelly (Wicklow, Fianna Fail)
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The 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 2024, the Government allocated €1.9 million to the implementation of this Strategy.
The following posts have recently been approved for recruitment:
- 1 x Consultant Clinical Geneticist
- 1 x Genetics Resource Associate
- 3 x Senior Genetic Counsellors
The National Strategy for Accelerating Genetic and Genomic in Ireland identified that to date Ireland had made some progress in developing its genetic and genomics services with pockets of excellence throughout the country. However, to fully realise the benefits of genetics and genomics, there is an urgent need to mainstream them so that they can be an integral part of our routine care and service delivery and to ensure timely access for patients. The Strategy acknowledged that a coordinated National Genetics and Genomics service is required to optimise patient outcomes and patient / citizen experience, while advancing research, innovation, and discovery in this fast-moving field.
The National Strategy has a 5-year implementation phase which is being led by the HSE National Genetics and Genomics Office (NGGO). In 2024, the NGGO will concentrate on six priority deliverables defined for the year. One of these priority deliverables is the continued development of equitable national genetics and genomics services, including genomic laboratory capabilities and associated bioinformatics. This will include the development of a national centre for genomics services.
This year, the NGGO will focus on the identification of current test providers (both national and international) used to meet the genetic and genomic testing needs of Irish patients. The information gathered through this process and a clinical operating model (which is currently being developed) will enable the future development of genetic and genomic laboratory capacity.
Another priority deliverable for 2024 is the development of a National Genomic Test Directory for Rare and Inherited Diseases. The NGGO have engaged with potential service users to understand the clinical need, to ensure this test directory appropriately meets that need. This directory will be a key enabling document used to inform the development of any new genomic laboratory capacity. 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.
Beyond 2024, planning will continue for the development of a national centre for genomics services and consideration will be given to appropriate locations for this centre.
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