David Cullinane (Waterford, Sinn Fein)
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1330. To ask the Minister for Health the status of the work of the national screening advisory committee regarding its consideration of expanding the national newborn bloodspot screening programme to test for more rare diseases; and if he will make a statement on the matter. [13949/21]

Stephen Donnelly (Wicklow, Fianna Fail)
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The National Screening Advisory Committee (NSAC) was established in 2019 with the remit to advise the Department of Health and the Minister for Health on all new proposals for screening and on revisions to existing programmes. The expansion of the National Newborn Bloodspot Screening Programme remains a priority work programme for the NSAC.  

Important progress has already been made in 2020 on the expansion of the National Newborn Bloodspot Screening Programme.  In July 2020, the NSAC approved the application to add ADA-SCID (adenosine deaminase deficiency-severe combined immunodeficiency) to the list of conditions screened under the Programme. As Minister, I approved this recommendation and the HSE are now preparing for the addition of ADA-SCID to the Programme which will bring the number of conditions that are currently screened for in Ireland from eight to nine.

I am committed to ensuring that any expansion of the programme will be safe, ethically robust and evidence based.  In examining the best approach, the NSAC have commissioned the specialist team who are in place in HIQA to support the Committee's work, to examine the international evidence in terms of the conditions screened for in existing bloodspot screening programmes; the decision-making processes that lead to the inclusion of a condition in an individual country’s newborn bloodspot screening programme; and the role of emerging technologies in programme expansion. I am determined to see the foundations laid for the ongoing expansion of the programme that maximises health outcomes for newborn babies. 

This important work will assist the NSAC in its consideration of the best approach to the expansion of the National Newborn Bloodspot Screening programme in line with international best practice.   

I have requested that the NSAC provide an update on progress and I expect to receive this update in the near future.