Written answers

Tuesday, 4 November 2025

Department of Health

Health Screening Programmes

Photo of Michael CahillMichael Cahill (Kerry, Fianna Fail)
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1917. To ask the Minister for Health to provide a timeline for the inclusion of SMA in the national newborn screening programme and implement the heelprick test (details supplied); and if she will make a statement on the matter. [59195/25]

Photo of Denise MitchellDenise Mitchell (Dublin Bay North, Sinn Fein)
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1928. To ask the Minister for Health the progress which has been made to ensure routine testing for spinal muscular atrophy (SMA) is included in the national newborn screening programme heel-prick test; when it is envisaged that every newborn baby will be screened for SMA; and if she will make a statement on the matter. [59289/25]

Photo of Barry HeneghanBarry Heneghan (Dublin Bay North, Independent)
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1936. To ask the Minister for Health when spinal muscular atrophy (SMA) will be included as part of the national newborn screening programme heelprick test, following the Government’s decision in November 2023 to include SMA in the programme, the reasons for the delay in implementation; and if she will make a statement on the matter. [59303/25]

Photo of Barry HeneghanBarry Heneghan (Dublin Bay North, Independent)
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1937. To ask the Minister for Health if she will provide an updated timeline for the commencement of routine screening for spinal muscular atrophy (SMA) under the national newborn screening programme; if dedicated staffing, laboratory capacity and logistical resources are now in place to deliver this screening; and if she will make a statement on the matter. [59304/25]

Photo of Barry HeneghanBarry Heneghan (Dublin Bay North, Independent)
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1938. To ask the Minister for Health the steps being taken to ensure that all babies born in Ireland are tested for spinal muscular atrophy (SMA) as soon as possible, in view of the impact early diagnosis has on long-term outcomes for affected children; and if she will make a statement on the matter. [59305/25]

Photo of Barry WardBarry Ward (Dún Laoghaire, Fine Gael)
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1947. To ask the Minister for Health the status of the addition of spinal muscular atrophy to the heel prick test for newborn babies; the timeframe for it to be introduced; and if she will make a statement on the matter. [59327/25]

Photo of Duncan SmithDuncan Smith (Dublin Fingal East, Labour)
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1951. To ask the Minister for Health to provide an update on the Government’s commitment for spinal muscular atrophy to be implemented in the heelprick test; and if she will make a statement on the matter. [59341/25]

Photo of Darren O'RourkeDarren O'Rourke (Meath East, Sinn Fein)
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1952. To ask the Minister for Health when she expects that spinal muscular atrophy will be included in the heelprick test, given this was a commitment of the Government in 2023. [59348/25]

Photo of Aisling DempseyAisling Dempsey (Meath West, Fianna Fail)
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1967. To ask the Minister for Health for an update on the inclusion of spinal muscular atrophy in the heel prick test. [59416/25]

Photo of Michael Healy-RaeMichael Healy-Rae (Kerry, Independent)
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1968. To ask the Minister for Health if spinal muscular atrophy will be implemented in the heelprick test by November 2025 (details supplied); and if she will make a statement on the matter. [59417/25]

Photo of Robert O'DonoghueRobert O'Donoghue (Dublin Fingal West, Labour)
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1976. To ask the Minister for Health the reason spinal muscular atrophy (SMA) has not yet been implemented in the national newborn heelprick screening programme, despite the decision announced in November 2023 to include SMA in that programme; if she will confirm the timeline for its implementation; and if she will make a statement on the matter. [59477/25]

Photo of Roderic O'GormanRoderic O'Gorman (Dublin West, Green Party)
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1984. To ask the Minister for Health when the national 'heel prick' test will be expanded to also test for spinal muscular atrophy; and if she will make a statement on the matter. [59528/25]

Photo of Jennifer Carroll MacNeillJennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I propose to take Questions Nos. 1917, 1928, 1936 to 1938, inclusive, 1947, 1951, 1952, 1967, 1968, 1976 and 1984 together.

As Minister for Health, I am determined to support our screening programmes, which are a valuable part of our health service, enabling early treatment and care for many people, and improving the overall health of our population.

Currently, all babies (between 3 and 5 days old) are offered Newborn Bloodspot Screening (generally known as the ‘heel prick’ test), which tests for nine rare but serious conditions that are treatable if detected early in life. The Programme for Government commits to continually reviewing the number of conditions babies are screened for.

Incremental progress continues to be made on the expansion of the National Newborn Bloodspot Screening Programme (NNBSP). In 2023, two recommendations from the National Screening Advisory Committee (NSAC) on the addition of Severe Combined Immunodeficiency (SCID) and Spinal Muscular Atrophy (SMA) to the NNBSP were approved.

In Budget 2024, an additional €1.4 million of new development funding was provided to support the SMA/SCID implementation process. Once both conditions have been fully implemented, the number of conditions screened for in Ireland will increase to 11.

In terms of the current implementation status, the HSE has advised that the equipment needed to enable the roll-out testing for SMA and SCID has been purchased, delivered and successfully installed at the newborn screening laboratory and significant progress continues with regards to the laboratory verification process. The recruitment process to hire the additional staff required to support the expansion of the NNBSP has been completed and work continues on developing screening pathways for both conditions.

In relation to concerns raised around the length of the implementation process, it should be emphasised that Ireland is not taking longer than other comparable countries to assess and implement additions to the NNBSP.

The Health Council of the Netherlands first recommended screening for SMA in 2019 and implementation was completed three years later in October 2022. In the United States of America, it took six years to fully implement SMA screening after it was added to the Recommended Uniform Screening Panel (RUSP) in 2018. In the United Kingdom, screening for SCID and SMA have been under consideration by the UK National Screening Committee since 2017 and 2018 respectively.

Nevertheless, I am acutely aware of how difficult it is for parents, families and children who have received a diagnosis of a rare disease, and how challenging daily life can be for them. This is why I remain committed to the further expansion of screening in Ireland in accordance with internationally accepted criteria and best practice.

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