Gino Kenny (Dublin Mid West, People Before Profit Alliance)
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53. To ask the Minister for Health the necessary steps that will be taken to increase new born screening from eight conditions to 40 as per best international practice; his views on whether the extension in newborn screening will significantly lower the possibility of babies being born with serious and often life-limiting conditions and the subsequent impact on their families; and if he will make a statement on the matter. [41159/19]

Simon Harris (Wicklow, Fine Gael)
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A National Screening Committee is being established and will hold its first meeting before the end of 2019, as per recommendation 5, contained within the Scally Review (2018). The Committee’s role will be to undertake an independent assessment of the evidence for screening for a particular condition against internationally accepted criteria and make recommendations accordingly. 

 I appointed Professor Niall O’Higgins as Chair of the Committee in July 2019 and asked that, as part of its initial body of work, the Committee prioritise a review of the national newborn blood-spot screening programme and look specifically at how Ireland should best proceed with an expansion in line with international best practice.  

 Ireland, very much like the UK has always evaluated the case for commencing a national screening programme against international accepted criteria – collectively known as the Wilson Junger criteria. The evidence bar for commencing a screening programme should and must remain high.  This ensures that we can be confident that the programme is effective, quality assured and operating to safe standards.

 It is correct that the number of conditions screened for by Member States (MS) in Europe does vary. This does not reflect major differences in the genetic background of populations or estimated prevalences but rather highlights different MS approaches to (1) the estimation of risks and benefits in their populations and (2) responding to the cultural demands and ethical difficulties arising from a lack of evidence to screen for many of these rare conditions. Detailed knowledge about the natural course of many rare diseases, their variants and specifically information on the medium and long term outcomes after early treatment initiation are still insufficient.

 There is no doubt that newborn screening programmes have the potential to be rapidly transformed by new technologies and new therapies but this highlights the need to continue with a robust, methodologically sound and detailed analysis of the evidence in each and every case against the Wilson and Junger criteria.

 Any future potential changes to the National Newborn Bloodspot Screening Programme will be incorporated as part of the Committee’s work programme.