Stephen Donnelly (Wicklow, Fianna Fail) | Oireachtas source

That is what we are going to do. The only question before us is what is the best way to do that. Everyone in this House is trying to do exactly the same thing, which is to introduce the best possible regime for newborn screening in the country. I believe we can and must do more.

Speaking specifically to the Bill, the reason I asked for a timed amendment was that I believe the committee needs to be left to build up some pace and a head of steam. It is already working. I will talk later about the ninth condition I have now sanctioned for screening, as recommended by the committee. It is already doing what it was set up to do. When I saw the Bill drafted by Senator Norris, I discussed it at length with officials. My conclusion was that were we to move the committee onto a statutory footing right now, there would be a real risk it would simply slow things down because, once things move to a statutory footing, there are all manner of procedures and things that have to be done. The reason for the timed amendment is only that - it is only that the committee is new. It is to let it do its work, let it build up a bit of pace, and we can then see where we are at. I will talk later to the various points on it. That is the only reason for the timed amendment. I believe there is a real risk that, in all of us trying to do the right thing, we could slow down what is vital and life-saving work.

I have tabled a response from Government to seek this 12-month extension. The national screening advisory committee is newly established. It has robust terms of reference and a diverse expert membership. It was established in 2019 on foot of the recommendations contained in Dr. Scally’s report. The committee's role is to provide robust independent expert advice when it comes to considering population screening programmes here. Substantial work was carried out to establish the committee and to staff it with independent and eminently qualified people and an eminently qualified chair, as well as a very broad membership, including what are called people advocates or patient advocates, with a very broad range of experience. In July 2019, Professor Niall O'Higgins was appointed chair and he brings a wealth of experience to the role. He was extensively involved in establishing a system of breast cancer services, BreastCheck, and the national breast cancer screening service.

The committee is set up in such a way as to enable it to be agile and in a position to respond to new developments and scientific research as they relate to population-based screening. The approach taken here is closely aligned to the approach in the UK, where the national screening committee is also on a non-statutory footing. Our committee has agreed terms of reference that closely mirror those set out in the Bill. Operating as it is currently established ensures the committee will be free to evaluate proposals for applications for any new screening programme or modification of existing programmes, as appropriate.

The committee communicates independent expert advice directly to me, as Minister for Health, and to the Department of Health, the HSE and relevant stakeholders and members of the public. It is strongly committed to increasing public understanding and confidence in the screening programmes as set out in its terms of reference. I would like to acknowledge the contributions of several Members regarding the broader screening programme. Obviously, we are focused on the newborn screening programme but the committee has a very important role, and we all have a very important role, in fostering confidence in those programmes.

In regard to the national newborn blood spot screening programme, I am very cognisant of the desire to expand this and agree wholeheartedly with the desire to expand it. I am acutely aware of how difficult it is for parents whose children have received a diagnosis of a rare disease, and how challenging daily life can be for them, their families and their children. It can be an overwhelming situation and can be very isolating for many families because of the significant work that is involved when a rare disease is diagnosed.

It is worth pointing out, on a positive note for Ireland, that we were one of the first countries in the world to introduce a national programme in 1966, so well done to everyone who was involved in that. The newborn screening programme known as the heel prick test is offered to all newborn babies in Ireland through their parent, parents, legal guardian or legal guardians when they are three to five days old. It checks for eight rare conditions that are treatable if detected early, which is key. Most babies born in Ireland will not have any of these eight rare conditions but, for a very small number who do, detecting a condition early has huge benefits. It means that treatment that is established as effective can start early, which improves health and prevents severe disability in later life or even death.I acknowledge the many potential benefits of expanding the national newborn screening programme and I am committed to identifying opportunities for future additions to it. Any other population-based screening programmes will be considered by the national screening advisory committee. Recommendations will be made following an independent and robust assessment of the evidence against internationally accepted criteria.

Expansion of the national newborn bloodspot screening programme has been a priority of the committee since its establishment. The newly-established committee has been asked to prioritise a review of the programme. This is important. Specifically, the committee is concerned with how to progress this in line with international best practice. To be clear, the committee is not just reviewing new evidence as it emerges. It has been specifically tasked with looking at our current programme and making recommendations on how it can be expanded. Work on the review will be progressed with the support of our regulator, the Health Information and Quality Authority, HIQA, which has been appointed to support the work of the committee. HIQA is far more than a regulator. For example, it is currently tasked with assessment of the technology for rapid Covid-19 testing. It has a vital technical and scientific role to play in support of the committee. I have asked the committee to report within six months.

Since its establishment, the committee has made one recommendation to me in respect of the national newborn screening programme. The meeting took place in July 2020. It recommended the addition of adenosine deaminasedeficient severe combined immunodeficiency, ADA-SCID. I hope any scientists in the room will forgive me. I accepted the recommendation and have advised the HSE of this decision. The HSE is now making the relevant arrangements for inclusion in the programme.

This is of key importance. If we were debating this today with nothing having happened except that a committee had formed somewhere and terms of reference had been agreed, I would be more concerned. Perhaps then it would be right to introduce a forcing mechanism. If the Oireachtas was not convinced the committee was doing its job, a statutory footing would be needed. The fact that the committee is doing its job is relevant and important. We have just moved from eight rare conditions to nine. The question is how to move to ten, 11, 12, 13 and so on.

Changing the 12-month extension would require a Cabinet decision. The 12-month period was my proposed way of meeting Senator Norris's concerns halfway. The committee probably needs the 12 months. However, when I read the Senator's Bill I noted that it would require the committee to report to me and me to lay the report before both Houses within six months of the committee being established on a statutory footing. As a proxy for that, I have already written to the chair and asked the committee to report to me within six months. I will go one step further. I suggest that we should retain the 12-month extension, but when I have the committee's report after six months I will share it with colleagues here. Perhaps we can convene formally or informally to discuss the progress that has been made.