Written answers
Tuesday, 29 July 2025
Department of Health
Health Services
John Brady (Wicklow, Sinn Fein)
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2858. To ask the Minister for Health the advances her Department has made in expanding the screening process for newborn babies with rare diseases; and if she will make a statement on the matter. [42411/25]
John Brady (Wicklow, Sinn Fein)
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2859. To ask the Minister for Health the diseases that are currently tested for in the screening process for newborn babies with rare diseases; and if she will make a statement on the matter. [42412/25]
John Brady (Wicklow, Sinn Fein)
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2860. To ask the Minister for Health if she will consider expanding the screening process for newborn babies with rare diseases to test for additional tests, in line with other EU countries; and if she will make a statement on the matter. [42413/25]
Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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I propose to take Questions Nos. 2858, 2859 and 2860 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’), 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.
I would note that proposed changes to Ireland’s screening programmes will be facilitated through established, evidence-driven protocols. The National Screening Advisory Committee (NSAC) is an independent expert group that considers proposed changes by assessing the evidence robustly and transparently, and against internationally accepted criteria, before making recommendations to me as Minister. The rigorous processes utilised by NSAC are critical to ensure that our screening programmes are effective, quality assured and operating to safe standards.
Progress continues to be made on the expansion of the National Newborn Bloodspot (NBS) Programme. In 2023, two recommendations from NSAC on the addition of Severe Combined Immunodeficiency (SCID) and Spinal Muscular Atrophy (SMA) to the NBS Programme were approved. In Budget 2024, an additional €1.4 million of new development funding was provided to support the SMA/SCID implementation process, and I am pleased that work is progressing. Once both conditions have been fully implemented, the number of conditions screened for in Ireland will increase to 11.
In terms of calls for further expansion of our NBS programme, in 2024, NSAC established a newborn screening subgroup to provide additional expertise to support the Committee’s decision-making processes. In May 2025, the newborn screening subgroup completed work on developing a framework for prioritising proposals related to newborn screening. This framework was subsequently used to identify a number of conditions, which were recommended to NSAC for prioritisation.
NSAC approved the proposed prioritisation and made a request to the Health Information and Quality Authority (HIQA), for the conditions to undergo evidence review, as resources allow. To support this, I have provided additional funding to increase the capacity within HIQA to undertake additional HTA processes simultaneously.
I would like to highlight that NSAC holds annual Calls for Submissions, which invite proposals from all stakeholders and organisations, including members of the public, the HSE and other medical professionals, for the introduction of new screening programmes or changes to existing programmes. The 2025 Call for Submissions is now live and will remain open until 12 September 2025.
Further information on how to make a submission, along with the list of conditions currently on NSAC’s work programme, is available on the NSAC website, at www.nsacommittee.gov.ie.
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