Duncan Smith (Dublin Fingal, Labour) | Oireachtas source

I welcome the Minister of State, Deputy Rabbitte. As was articulated by Deputy Cullinane, I want to note that the Minister, Deputy Stephen Donnelly, has done an awful lot of work to bring this complex Bill to the House so I am sure he is sorry to be missing out on this debate. It is not lost on us that he has done an awful lot of work to get this long overdue Bill before us.

It is a long and complex Bill but it is not one that resolves everything. It is a foundational Bill that we hope will provide regulatory certainty around this area. The arrival of this Bill on Second Stage today will provide an air of relief, not that we have reached the finish line as we are far from it but because it is an important moment now that this AHR Bill has finally reached the Dáil. There is a desire from the Government and the Opposition to move the Bill through as expeditiously as possible, while also being as careful as possible. It will require and be subject to a number of amendments and suggested amendments because we are not dealing with an area that is simple or straightforward. The sheer length of the Bill is testament to that and we welcome this move towards finally regulating AHR in Ireland. The word "laggards" is used an awful lot in other areas and we certainly have been behind our European sisters and brothers in regulating this area. There are people all over this country who have been waiting for this Bill for many years. For many it has come too late and we need to recognise that but there are those who hope that we will be able to move it forward and that, in line with the model of care for infertility, which the Government is pushing and funding and which will need to be scaled up dramatically, we are on the cusp of a proper, publicly-funded and well-regulated model of fertility care in this country. That is somewhere that the vast majority want and need us to be.

The establishment of the assisted human reproduction regulatory authority, AHRRA, is welcome and it is the foundational element of this Bill. It is the right approach to take. The AHRRA will have to adjudicate, decide and provide certainty on a lot of complex issues. One area the Bill deals with is posthumous AHR, which is complex and which has ethical and moral questions. People are suffering from the lack of regulation on this. Anyone going through assisted reproduction has been doing so without the regulation that this Bill will provide through private clinics, many of which operate different standard operating procedures. The clinical care has been good, it has been paid for and it is expensive. However, there are different models of operating procedures in different clinics.

People go for AHR for many different reasons. Some go because they have life-limiting conditions and because they are looking to start a family before their health deteriorates. There are others who are otherwise in perfect health who need assistance with fertility. If a tragedy befalls these people and one of the prospective parents unexpectedly and tragically passes, then all that is left in any physical form might be this gamete, this embryo which is now in a clinic. The clinics have different operating procedures and when you go to a clinic and you are in good health and you do not have a life-limiting condition, your headspace is not about what will happen if you or your partner loses their life. It is about creating life so when a tragedy occurs and one prospective parent is left, he or she is subject to the small print of the many forms he or she will have signed and the vagaries and rules of that particular clinic. This Bill and the AHRRA will need to make provision for the people who are dealing with that situation now.

There is also a provision in the Bill that a surviving partner will be unable to access posthumous AHR for a year. I am sure that provision is in place because of grief and having to deal with same but we are often dealing with people whose clocks are running down. Time is very important to these people so there needs to be a provision to deal with that because a year is really important at a certain stage in life. There are no easy answers to this and we may not be able to capture this in legislation. It might be possible to capture this in the practices of the AHRRA and it is something I would like to see discussed further.

There is no doubt that the Bill is a huge and positive step in the right direction. Delivering this framework and regulating for assisted reproductive care is beyond a necessity at this stage. There are many different elements to this issue and we want to work towards a public model of assisted reproductive care. There are workers' rights issues and the Labour Party brought forward a Bill on this in the Seanad on the back of the great work of our Lord Mayor of Dublin, Councillor Alison Gilliland and the Irish National Teachers Organisation, INTO, in terms of leave for people who are going through fertility treatment. That is another important and practical part of this debate that needs to be discussed. We have talked about the costs of this Bill and that issue will have to be met with a proper model of public care. We will need strong workers’ rights on leave to ensure that people are able to take the time they need to get their treatment and deal with the consequences of same, be they positive or negative. There is a Bill in place that has all-party support and that should be progressed.

This Bill will also help to tackle what has been quite a stigmatised area over the years, as people have felt that if they have had to go through assisted reproductive care, they have somehow failed. They have sometimes had to go through that journey in silence without the support or knowledge of their close friends or family. It is totally untrue to suggest that these people have failed. In recent years we have seen people come out to share their fertility journeys, whatever those journeys may be. They should be applauded and while an awful lot of their work has been soft in the sense that it has not been direct engagement in pre-legislative scrutiny, for example, it has created the environment in which this Bill has finally been brought to the Houses of the Oireachtas. I want to acknowledge those individuals around the country who go on social media and tell their social networks that if they have a question about the process they can ask them. People in my life have put their hands up and invited me to ask them about their fertility journeys and offered to answer any questions I might have. That is not an easy thing to do and the people who do it have played an important role in getting us here. They are not part of any particular group but they need to be acknowledged.

The Bill speaks to domestic and altruistic surrogacy, which is long overdue. International surrogacy has been put into the remit of the time-limited all-party committee. That is good if it works and if it is progressed but it is not good if it is seen as something that is being kicked down the road. I do not think that is the case and that is not the sense I am getting; there is a desire and energy to deal with this. Ukraine is another example of why we need to deal with this.

To see that progress and to deal with the difficult issues, it is to be hoped that a way through them will be found because the reality on the ground is this is happening. Judgments can be made and we need a rights-based approach to this but at the end of the day, if I get a call from my childcare provider that my child needs Calpol, because he is running a slight temperature, I can give that permission but there are parents in this country who cannot do so because they had their child through international surrogacy. These are the practical problems encountered. Who loses out in that situation? It is the child.

It has been more than 15 years since the publication of the report by the Commission on Assisted Human Reproduction in 2005, which called for new laws, and five years since the general scheme was published in 2017. I have mentioned that we are way behind internationally in regulating this space, unlike other EU countries, and that is why this Bill is welcome. There are cost barriers to IVF and assisted reproductive therapies at present. This is where we need to get to in this country. While this is a foundational regulatory Bill, the real proof of its success will be if we have an egalitarian and properly democratic public system that is not just open to those who have the means and the many thousands of euro that are required. Many people do not necessarily have that money on tap. They have to get loans that have to be paid back with interest. That is where we need to be. In the UK, the NHS funds IVF treatment. As we have seen in recent years that it has become harder to access for couples, it is important that the model of care we roll out is robust and future-proofed.

Part 6 of the Bill covers the complex ethical area of pre-implantation genetic diagnosis and sex selection. This is an area of concern for many people and it must be closely regulated. It is important to differentiate between pre-implantation genetic diagnosis, most commonly associated with cases in which there is a known family history of a genetic mutation such as cystic fibrosis or Huntington's disease, and the broader case of pre-implantation genetic screening that often presents other ethical issues due to age or parental concern in which embryos are checked for sporadic mutations or chromosomal abnormalities. We can remark how important this area is for so many families and how it is a chance to address the great burden many families face where there is a known history or genetic risk of devastating inherited diseases, such as cystic fibrosis, Huntington's disease, haemophilia, or fragile X syndrome, to ensure their children do not carry the condition where pre-implantation genetic diagnosis is deemed acceptable and applicable.

Critical to the regulation of pre-implantation genetic diagnosis, PGD, however, is ensuring there is a publicly funded option for IVF, as I discussed, and funding for necessary screening. I ask the Minister of State to confirm that the HSE will fund pre-implantation genetic screening for embryos where it is deemed ethically applicable, and that there would be a system in place to support families. Will the Minister also confirm what approach will be taken for families who decide to pursue the screening of their embryos where there is not a known family history or specific genetic disease, for example, if they decide to screen for chromosomal abnormalities or sporadic genetic mutations where the age barrier may not apply? Again, they are important, difficult questions that we need to nail down.

Human leukocyte antigen, HLA, typing of embryos is provided for in the Bill in order that the child's HLA matches that of a sick sibling, often for stem cell donations or treatment of specific genetic diseases or leukaemia, and are often called saviour siblings. This would avoid the rejection of the stem cells by the sick child's immune system. This is, again, a very sensitive issue in which there are concerns about the possible exploitation of the child, but the Bill does provide clear criteria. As this is a constantly evolving area of medical practice, it should be kept under constant review. I urge the Minister of State to consider specifying in the Bill that the board of the AHRRA establishes an ethics committee, as recommended in the pre-legislative scrutiny, and that the resources are put in place for the funding of genetic services, including geneticists and genetic counsellors, and the provision of pre-implantation genetic diagnosis where it is deemed to be necessary by the board. I will finish on that point.

The international commercial surrogacy issue will go before the special Oireachtas committee and that has to go in tandem, inasmuch as possible, or at least follow on as quickly and expeditiously. There are other related issues, as I mentioned, such as the Organisation of Working Time (Reproductive Health Related Leave) Bill. However, the model of infertility care needs to be properly funded and properly rolled out. If this Bill works and we have a regulatory framework that is trusted and is up to the international standards that we strive for, and that we have a public model of infertility care that would be open to all coming behind it, we will finally be able to catch up and provide the healthcare that we need and have a responsibility to provide for the people in this country who are looking to create life, to nurture life, to love life, and to provide life. I look forward to what the Minister of State will say in summing up this Stage, as well as to seeing this Bill progress through the subsequent Stages.

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