Richard Boyd Barrett (Dún Laoghaire, People Before Profit Alliance)
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253. To ask the Minister for Children, Equality, Disability, Integration and Youth to outline, recognising that some disabilities are associated with particular genetic diagnoses, the cooperation that exists between her Department and HSE-funded genetic services, including data sharing arrangements, genetic and genomic clinical services and genetic counselling services; and if she will make a statement on the matter. [15927/25]

Richard Boyd Barrett (Dún Laoghaire, People Before Profit Alliance)
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254. To ask the Minister for Children, Equality, Disability, Integration and Youth recognising her Department’s commitment to early intervention to maximise disabled citizens’ capacity and recognising that some disabilities are associated with particular genetic diagnoses, to outline her views on how genetic counselling could support disability services; and if she will make a statement on the matter. [15928/25]

Hildegarde Naughton (Galway West, Fine Gael)
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I propose to take Questions Nos. 253 and 254 together.

The Minister for Children, Equality, Disability, Integration and Youth has policy responsibility for co-ordination of disability policies across Government, and for specialist community-based disability services. The policy approach is needs-led and is based on a social model of disability, rather than on particular diagnosis or causative factors, in line with the definition of disability in the Disability Act 2005:

“A substantial restriction in the capacity of the person to carry on a profession, business or occupation in the State or to participate in social or cultural life in the State by reason of an enduring physical, sensory, mental health or intellectual impairment”

Operational responsibility for specialist community-based disability services lies with the Health Service Executive (HSE). Early intervention services for disabled children with complex needs are delivered via the Children’s Disability Network Teams, which are working to deliver services in line with the Roadmap for Children’s Disability Services. Any links between Disability Services and HSE-funded genetic services would be an operational matter for HSE.

The Department of Health, which has policy responsibility in this area, and the HSE are working to improve genetics and genomics services offered in Ireland and striving to deliver a world-class patient and family-centred service that can be accessed equitably across the country and lifespan of patients.

The National Genetics and Genomics Office (NGGO) was established in 2023 to drive the implementation of the National Strategy for Accelerating Genetic and Genomic Medicine in Ireland and improve Ireland’s genetic and genomic medicine services. The Department of Health has been working closely with the NGGO to manage and implement this hugely valuable programme of change and to overcome the present and historical challenges associated with delivery of genetic and genomic medicine in Ireland.

The Department of Health has provided the resources to deliver the priorities which have been approved as part of the National Service Plan 2025 and include recruitment of front-line staff including Consultant Clinical Geneticist, Genetic Counsellors and Genetics Resource Associates.

Already this year we have seen the launch of the National Test Directory for Rare and Inherited Diseases (January 2025) which will be expanded in due course to cover wider health care areas. In addition, resources have been approved to set up laboratory elements of the service, such as the National Genomics Processing Service and to improve access to clinical services.

The Department of Health 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.

The processing of genetic data is governed by Part 4 of the Disability Act 2005. In particular, s 42(3) provides:

“A person shall not process genetic data unless all reasonable steps have been taken to provide the data subject with all appropriate information concerning—

(a) the purpose and possible outcomes of the proposed processing, and

(b) any potential implications for the health of the data subject which may become known as a result of the processing.”

Richard Boyd Barrett (Dún Laoghaire, People Before Profit Alliance)
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255. To ask the Minister for Children, Equality, Disability, Integration and Youth if there is any cooperation between her Department and the Department of Health National Genetics and Genomics Strategy Steering Group in the development of policy and strategy in either Department; and if she will make a statement on the matter. [15930/25]

Hildegarde Naughton (Galway West, Fine Gael)
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My Department is actively engaging with colleagues across government, including the Department of Health, on the development of disability policy, including the next National Disability Strategy.

This Strategy will operate as an overarching framework for disability policy across the board. In line with the mainstream-first principles of the United Nations Convention on the Rights of Persons with Disabilities, avoiding segregated or separate service provision for disabled people, it will embed a mainstream-first sectoral approach to national disability policy implementation, reinforcing the role of all public bodies in executing their functions with regard to Ireland's obligations under the UNCRPD. Actions will be organised under relevant thematic pillars, which will be led in turn by the relevant departments and agencies taking responsibility for actions as befits their remit.

An important pillar of the Strategy is dedicated to the achievement of strategic objectives and actions to advance the health and wellbeing of people with disabilities. Where relevant, this pillar will encompass cooperation between my Department and the Department of Health to advance the provision of general and specialist healthcare services to people with disabilities, and both Departments have collaborated closely during its development.