Stephen Donnelly (Wicklow, Fianna Fail) | Oireachtas source

I thank the Chair. I am delighted to be here today. It is a landmark day as we commence the Committee Stage of the Bill.

There are people I want to thank, starting with the members of the committee. They put a lot of work into this, attended briefings and submitted a list of very well thought-through amendments. There was pre-legislative scrutiny, PLS, some time ago. In fact, I was on the committee at the time of the PLS in 2019. A great deal of work has been done and I thank the committee for facilitating what will probably be several days of Committee Stage.

I also thank the officials in my Department. The officials who are present have been working night and day on this to get it to the point where it is now. Officials from the Departments of Justice and Children, Equality, Disability, Integration and Youth have been working on this because the Bill is so wide-ranging. I gave a commitment to the advocacy groups that we would have the Committee Stage amendments through government by the end of the year. I put a lot of pressure on my Department, and the other Departments were under a lot of pressure to meet that. They did it by working long hours, weekends and late nights across the three Departments. I just want to acknowledge that without that work this committee hearing would not be happening today at all.

I also want to thank the advocacy groups. It has been my great honour to meet on numerous occasions with many of the advocacy groups who have been pushing both on the assisted human reproduction, AHR, side and on the surrogacy side, both domestic and international. As we are all aware, the reason that we have 256 amendments over 100 pages is essentially we have a Bill within a Bill, which is the international surrogacy piece. I acknowledge the work of the advocacy groups. They have been fantastic.

Obviously, I need not tell members what we are dealing with is complex and sensitive and I am acutely aware that at the heart of the scenarios that we will tease through are individuals and families, many of whom are faced with very difficulties or who are in very difficult situations.

The Bill, as initiated, is to regulate assisted human reproduction. This focuses on the regulation for the first time in Ireland of a wide range of AHR practices. The Bill, as initiated, provides for domestic altruistic surrogacy but did not contain provisions to regulate surrogacy arrangements abroad. It is complex, far-reaching legislation and it will for the first time encompass regulation on a wide range of practices undertaken in Ireland. It includes gamete and embryo donation for AHR and research. It includes domestic altruistic surrogacy, pre-implantation genetic testing of embryos, posthumous AHR, and embryo and stem cell research. That is the Bill, broadly as initiated.

However, as colleagues will be aware, we have more than 100 pages of amendments that cover a great deal more. I certainly have no recollection of a Bill having 100 pages of amendments previously. The clerk to the committee might be able to tell us if we are making a little bit of history.

The amendments broadly have four aims. The first is to legislate for future international surrogacy arrangements. As far as the Department can ascertain, Ireland is the first country putting this legislation in place. Many other jurisdictions will look to see how we approach it, the decisions we make and how it goes.

The second is to legislate for the recognition of past surrogacy arrangements, both domestic arrangements and international arrangements. Committee members will join me in wishing those families and children the best. We have hundreds of families around Ireland today where the children do not enjoy the rights, protection and recognition of a full parental legal recognition to one of their parents and that is something that we are fundamentally going to change. I want, and I know all colleagues want, full parental recognition and rights for all of these families, some of whom both I colleagues have had the great pleasure of meeting. What we will put in place through these amendments is a full retrospective route to full parentage for these parents and wonderful children. Getting this right has taken up a great deal of time and I am delighted that we are here today with these amendments to do that.

The third aim is to amend the 2022 Bill, as published. This includes the use of ovarian and testicular tissue, AHR counselling, pre-implantation genetic testing and genetic counselling. Therefore, we are further evolving and improving the domestic AHR services as well.

Fourth, we are amending the Children and Family Relationship Act 2015. I have met with the advocacy groups. There are numerous requests they had on provisions that needed to change in that Act and to the greatest extent possible, we are facilitating that. There are one or two where we cannot at this time but maybe in the future we can. Certainly, I have a list of nine, and we will go through various of them here. We are fully facilitating six of them, we are working on one and in the case of two of them, it has not be possible for various reasons. However, we are making some important changes to the Children and Family Relationships Act.

I accept that we still have a long way go to before the Bill is enacted. Given the size and complexity of the newly expanded Bill, it will take a number of meetings of the committee but important progress has been made and I look forward to the hearings and getting this Bill through.

I want to inform colleagues and the parents who will be watching these proceedings that we are getting the authority set up in parallel. We cannot formally establish it until the legislation is enacted but the regulations which will come after this Bill, the design of the AHRRA, the staffing of the authority and the funds all are being put in place by us now so that when the Bill is signed, hopefully, by the President, we will be able to move much quicker than would normally be the case in terms of getting that authority set up. It will be relevant for one of the issues we will come to, which is the interim period in terms of retrospective versus prospective.

On a different matter, colleagues will be aware of a rare disease called metachromatic leukodystrophy, MLD. They will be aware of a man named Les Martin, who has been one of the most powerful patient advocates I have ever seen. Many of us here have met and know Les. Les's son Cathal died of MLD when he was aged five. Les, for years now, has been advocating for treatment. There is a treatment called Libmeldy and he has been advocating for newborn screening so that in Ireland we can identify quickly children who have MLD and then provide an effective treatment. I am delighted that, just in the past hour, we announced that Libmeldy has been approved for use in Ireland. There were three conditions we need in place. The first is the money. We have allocated €30 million this year for new medicines and that will cover the cost. It is an expensive treatment. It costs several million euro per child. We have the money in place.

The second thing we needed in place was approval for Libmeldy. We have that as of this morning. How it works is the child and the family go abroad to a treatment facility, the child is treated abroad and they come home.

The third thing we need is it included in the newborn screening programme. I am writing to the chair of the advisory group this morning to ask that this be given consideration as a matter of urgency because we now have an effective treatment. Obviously, the group's advice is independent but I am seeking its advice on this as a matter of urgency.

I spoke this morning to a dad, Seán Kenny, whose son, Aidan, died of MLD recently. Seán and Les know each other. There is no doubt that part of Cathal's and Aidan's legacy is Libmeldy being authorised and a crucial step in being able to identify newborn infants with MLD and provide their treatment. I want to acknowledge Cathal and Aidan, two five-year-old boys, who both died of MLD. They inspired and drove their parents to fight, agitated and engage with all of us in the Oireachtas. Part of their legacy will be an Ireland now where MLD is found early and children get this very effective treatment. I wanted to acknowledge both Cathal and Aidan this morning. I thank the Chair for the time to say that.