Ireland has a well-established newborn screening programme. Newborn screening, more commonly known as the heel-prick test, is offered in respect of all newborn babies in Ireland through their parents or legal guardians when they are between three and five days old.
We have expanded the programme in recent years. Up to December 2018, we were screening for six conditions. Since then, the test has been expanded to screen for eight conditions.
I or my officials regularly meet with rare disease advocacy groups and families directly invested in the topic of the expansion of the Newborn Screening Programme.
A National Screening Committee will be 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 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. Any future potential changes to the National Newborn Bloodspot Screening Programme will be incorporated as part of the Committee’s work programme.