Simon Harris (Wicklow, Fine Gael) | Oireachtas source

I thank the House for the opportunity to speak about our national newborn screening programme. In particular, I thank Senator David Norris for tabling this Private Members' motion on such an important topic. I am a long-time admirer of the work of the Senator. The families affected are lucky to have such a champion in him. When Senator Norris takes an interest in a human rights issue, he takes it seriously and will see it through. I look forward to working with him in that regard.

I understand the genuine interest in this matter and I share it. We have all heard about the real-life experiences of parents whose children have been affected by rare diseases. Most recently, as the Senator stated, I had the opportunity to meet Les and Lynda Martin, whom I welcome to the Oireachtas. They are parents to two young boys, Cathal and Ciaran, battling a rare disease. I welcome their sister, Holly, as well.

What seems complex and difficult to the rest of us is personal to Les, Lynda and their family. They have shown remarkable courage and determination in telling their personal story. People do not tell their personal stories because they want to do so. They do not do it for the sake of it but because they want to improve the system and ensure that no other family has to endure the difficult circumstances they have endured. People tell their personal stories to change minds, hearts, policies and laws. In telling their story, the Martin family have brought a renewed focus and priority to this matter and I thank them for that. Les and Lynda opened the doors of their family home to me. I was delighted to be given an opportunity to meet them, their children and Biscuit, the family dog. They are a special family and one I hold in high regard. I thank them for being here this evening.

Like so many facing adversity, they strive to make the situation better for those around them in future. I am keen to work with them and the House on this matter. Senators have already referenced how there have been cross-party initiatives and efforts across the spectrum to progress this issue. I commit to working with all Members to achieve our united goal of making our screening programme the best and strongest it can be and to working with other countries to achieve best international practice.

Ireland has a well-established newborn screening programme. It was one of the first countries in the world to introduce a national newborn screening programme, which it did in 1966. We were world leaders in this area. 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. It is a completely safe procedure that checks a sample of the baby's blood for eight rare conditions that are treatable if detected early in life. 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. Most babies born in Ireland will not have any of these eight rare conditions that the heel-prick test checks for. It is important to state that for expectant parents who may be watching this debate. However, for the small numbers of babies who do, detecting a condition early has major benefits. It means treatment, established as effective, can start early. This can then improve their health and prevent severe disability or even death. Each year, over 100 babies are identified and treated. Yet, the benefit is greater still. It helps a family to plan, prepare and make decisions on future choices as well. That knowledge and certainty is important.

As Senator Norris mentioned, Italy recently enacted legislation for mandated national screening. Extended screening has become a mandatory national public service in Italy and every newborn there receives a free and compulsory test. The test can provide early diagnosis, shortly after birth, in respect of almost 40 rare metabolic hereditary diseases. The Italian approach is certainly generating much discussion and debate at EU level. Unlike what Senator Norris has suggested, the health authorities in Italy also screen for some conditions that are not treatable. That is a matter of ethical debate. They screen for conditions that are treatable and also those that are not. Last month, at the request of Les Martin, I had the opportunity to speak to my Italian counterpart, Ms Giulia Grillo. I also had the opportunity to meet her Italian delegation at the recent Employment, Social Policy, Health and Consumer Affairs Council in Luxembourg. I had the chance to discuss their approach and to ask if we can learn from them and their experiences. They kindly offered to host my officials on a visit to Rome to discuss further their policies and to see their facilities. I am pleased to say that my officials, at my request, have accepted that invitation and are now working out a suitable date for the visit.