Wednesday, 10 July 2019
Genetic Testing: Motion
Cuirim fáilte roimh an Aire Stáit. I welcome the motion and I am proud to speak on behalf of Sinn Féin. I thank Senator Norris for extending the opportunity to add my name to this very worthy motion. The issue has already been discussed in the Lower House, where a Sinn Féin amendment to a motion included a call for a newborn screening test. In this State newborn babies are screened for only eight conditions. In Britain the figure is 9; in Switzerland, 13; in Sweden, 24; in Portugal, 25; and in Italy, 40. The failure to screen babies in Ireland to a higher standard has devastating effects on many families. Sinn Féin's work on this is in response to the courageous campaigning by Les Martin, who is in the Gallery. Les has gone to great lengths to highlight the solution to this problem. He has organised a successful online petition and he presented a briefing in the audiovisual room organised by my colleague, Deputy Brady, earlier this year. He has outlined time and again what could be done and what we need to do. He has woken us up to what should happen and we now need to act on it. Deputy Brady told Les's story in the Dáil in June. What struck me was the courage it takes to talk about one's own struggles and circumstances and to use them to prevent similar situations happening to other families. Les and his family should absolutely be commended on this, and we thank them.
The committee appointed a chair today, which is to be very much welcomed. The Minister talked a little about expanding the programme but it will not be mandatory, and of course it should not be. At present 99% of parents take up the agreed screening, as strongly recommended. Every mother with her newborn baby is aware of the heel prick test, or newborn screening, to use the other terminology for it. It is the first medical investigation or test of the mother's baby when he or she is three to five days old. It is a kind of rite of passage for every mother holding her newborn.
We need to reform and expand the newborn screening programme to guarantee that every child in the State has the right to be screened at birth for any disease for which there is a viable treatment. As this motion recognises, this is what was done in Italy when a law was passed to the effect that every Italian citizen is entitled by right to be screened at birth for any disease for which there is a viable treatment. The approach is to the effect that if the technology and research are there and backed up, we should use them. As we have heard, the expansion of the programme would not incur a huge cost but would have a significant impact on and benefit for families and babies and would in the long run save the State millions of euro. Early detection and early intervention are very important. Having been a nurse and spoken to colleagues, midwives and public health nurses, I have learned they see this as a no-brainer. The programme is in place already and further testing does not inflict any more discomfort on a baby. Let us just expand the programme. It is an opportunity, at a cost of €50 per child. This is a pittance by comparison with the return in terms of an infant's health and his or her health throughout life.
In an email to us, Mr. Martin stated the problem in asking everyone to do something is that everyone leaves it to everyone else. I feel a little guilty about not responding promptly and ask Mr. Martin to forgive me. Motions are not legally binding and this has caused serious frustration for me and colleagues in this House after the passing of previous motions. Motions, however, communicate where the House stands on issues and are a function of democracy. I ask the Minister of State to take this seriously. I believe he will and that the Minister, Deputy Harris, will also do so. I ask them to act immediately. It would be appropriate for one of them, or both, to come back early in the next term to update us on advancements. I am delighted to see this motion before the House.
I congratulate Senator Norris on taking up the mantle for the rest of us on behalf of this House. I thank and congratulate the Martin family, especially the dad, Les, a man on a mission. Now he has handed the mission over to us and we will not fail him.