Ivana Bacik (Independent) | Oireachtas source

We already have a very high level of take-up because parents recognise the importance of the screening test. The Italian law and the information provided to parents state that positive results do not always mean there is a disorder. Of course, there is follow-up testing and so on. That is vital and must be built in. The key point is the right to be screened at birth for any condition for which there is viable treatment and, indeed, for some conditions for which there is not. The mandatory nature of the test in Italy only relates to those disorders which are listed as being required by law. There are other disorders which may be included and for which parental consent must be given. Those are the sort of issues that might be teased out by the national screening committee. I offer those views on the motion proposed by Senator Norris.

I listened with great interest to the comments of Senator Higgins. Clearly, there is now an international and transnational interest in this issue. I note that there was a debate in the European Parliament on the issue of expanded newborn screening in January of this year at the behest of the Italian health minister and others. As Senator Higgins stated, it has also been discussed at the Organization for Security and Co-operation in Europe, OSCE. It must be of some concern that there is such discrepancy or inconsistency across the EU in terms of the number of disorders which are being screened for. According to the figures provided by the Minister, two disorders are screened for in Malta, eight in Ireland - it was only six until 2018 - as many as 29 in Poland and 40 in Italy. It is clear that Italy is leading on this issue. Les Martin informed us how his family's experience was one of the catalysts for change in the law in Italy, which again shows the incredible courage he and his family have had in pushing for change in the law in Ireland and elsewhere.

I note from the information provided by Mr. Martin that the motion is supported by a range of front-line organisations such as the Jack and Jill Children's Foundation, LauraLynn Children's Hospice Foundation, Enable Ireland and Rare Diseases Ireland. These organisations represent parents and families who are on the front line of caring for children with life-limiting conditions and who see the benefit on a human level that would be derived from passing a law of the sort that was passed in Italy.

Of course, the humanity of this is the key issue, but there is also a very clear economic cost saving aspect because when conditions are detected and treated there is an immense saving to the Exchequer in terms of ongoing lifelong care, as been pointed out by Les Martin. That is another compelling argument for expanding our newborn screening programme.

As Senators and the Minister made clear, we already have a newborn screening programme and this would simply involve expanding it. It would not involve any new invasive treatment or intervention for newborns. A strong and compelling case can be made to expand the programme and implement a law along the lines of that implemented in Italy. I very much look forward to continuing to press, along with Senator Norris and other colleagues, for the introduction of expanded screening and to assist and support the Minister in his endeavours to so do.I welcome the strong support and commend Senator Norris and the Martin family for all their work on this important issue.