Catherine Connolly (Galway West, Independent) | Oireachtas source

I welcome the opportunity to speak on this Bill. I have done my best to get my head around it. I welcome the detailed speech given by the Minister. I will come back to the glaring absence of any reference to the necessary infrastructure to make this a success. The Minister said he has no doubt that this will increase the donor pool and pointed to Spain. That is not accurate, actually. On the system that appears to be wonderful in Spain, as Deputy Shortall already pointed out, during the committee discussion of the general scheme they expressed caution. Mr. Mark Murphy of the Irish Kidney Association cited a Spanish study which found:

In summary, the evidence does not support that shifting towards presumed consent [which this Bill is doing] will solve organ shortage. But still today, this measure is seen as a magic solution that departs from conviction that low deceased donation rates result only from a negative public attitude.

The authors of the study go on to say that we should never blame the public. What came out through the committee hearing, which I will come back to, was the absolute need for infrastructure. There was some disagreement or variation in respect of the best way forward between the representatives of the different organisations. The representative from the Irish Kidney Association said we need both an opt-in and an opt-out. Other delegates said no, we just need an opt-out. Notwithstanding that they were all in agreement on the common denominator of infrastructure, dedicated staff teams and a nurse. There is no mention of that anywhere in the Bill. I come from Galway city and we have a hospital closed or open depending on staff out in Clifden. Staff is essential but there is not a mention of it, or costing for it or how we are going to do it.

I have some concerns that we are simply going for an opt-out. I share the concerns expressed by the Irish Kidney Association. It asked for both an opt-in and an opt-out. The ethics of consent are at the heart of all of this. They have been utterly ignored by the medical profession for a very long time in this country. Obviously it has changed in the last number of years. It seems to me that we need to keep it to the fore. I welcome the Bill. I welcome the opt-out register. However, the Bill would have benefitted from prelegislative scrutiny. I disagree with most of my colleagues here who say that prelegislative scrutiny was not necessary. I think it was absolutely necessary given the background to the Bill and the time it has taken to come this far. It would not have made a huge dent into this time if a few days had been taken to look at this Bill. It covers so much in its six Parts and 105 sections. It really needed proper discussion. I do not know why prelegislative scrutiny was put aside.

Part 2 provides for transplantation and brings in the concept of deemed consent, which we are told is in place in most countries in Europe. Part 3 provides for pathology practice and post mortems and the absolute need for consent from the family or the person before they die. Part 4 provides for a legislative structure for anatomical examination. Imagine that we are utterly dependent on an 1832 Act. Almost 200 years later we are taking pride that we have finally got around to changing legislation. Part 5 provides for public display of bodies and what is needed there.

There is also a section providing for giving tissues or cells to pharmaceutical companies. It sets out that the manager of the hospital makes the decision and then goes to the family and asks them. I would have thought that it would have benefitted from further scrutiny and analysis as to when and how we give tissue, cells and so on to a pharmaceutical company. Given the background to this, I would have thought so. That is not the Minister's fault but I think he agreed with the waiving of prelegislative scrutiny.

I want to thank the Library and Research Service for its very detailed Bill digest. I want to say that publicly and out loud. Very often it is left struggling with very little time. In this situation it had time, the Bill was published in time and it looked at it and produced a comprehensive report.

Let us go back to where this Bill is coming from. Nothing here was proactive. No member of a medical profession reflected and said we should do something about our medical paternalism, as Professor Madden has described. There was no self-reflection. This came from England, from Bristol and the other two hospitals where it was exposed that there were, I think, more than 30,000 bodies or organs kept. Finally here as a result of the inquiry in England, questions began to be asked and we got the Dunne inquiry. Does the Minister remember that? It was set up in 2000 and was supposed to take a couple of months. It was supposed to be a two-stage inquiry, a private inquiry by the senior counsel followed up by a committee inquiry. It did not happen. It cost €20 million. Parents for Justice withdrew from it. Eventually some type of report on three hospitals in Dublin was given to the former Minister, Mary Harney.

Nothing came of that, though. Most importantly, there had been no redress or accountability for parents whose babies' organs had been sold off without their knowledge. This is the background to the Bill and happened in 2005, when the Government said that would be the end of it.

The Government asked Professor Deirdre Madden to look at all of the documents examined by Ms Anne Dunne SC as well as all of the information and how it was hidden from parents that organs were taken during post mortems and kept and various things were done with them. Professor Madden stated that communication was, at the very least, bad or non-existent due to paternalism. She made 50 recommendations. Someone in government - perhaps the Minister for Health - might tell us whether those 50 recommendations were ever implemented. Some of them relating to consent and the matters I have outlined are included in the Bill, which I welcome, but there were 50.

One might believe matters would change, but fast forward to the Willis report in 2009. It was an independent audit of 32 hospitals and there were calls for regulations concerning consent for the removal, retention, use, storage and disposal of organs. Fast forward again to "RTÉ Investigates" in 2021. Thanks be to God for "RTÉ Investigates". Often, we in the Dáil follow on from what it does. It investigated the ongoing practice of the disposal of perinatal organs at Cork University Hospital, with 18 families identified and so on. I do not wish to dismiss this in any way, but it has already been outlined. I am simply raising it as the background to the Bill. There was an internal audit by the HSE in 2022 following revelations at the Cork hospital. According to the audit, a consent policy to cover all aspects of the post-mortem process was not in place. This was almost 23 years after questions were raised in 1999. Organs from two perinatal post mortems had been incinerated since 2019 in Limerick. It was the policy of Our Lady of Lourdes Hospital, Drogheda, to send retained organs for incineration and so on. At University Hospital Galway, organs from 28 babies were held for between 12 and 32 months. At Portiuncula, organs from two babies were kept for between 16 and 18 months. So on and so on, all because of a lack of staff, which has not been addressed.

There will be an opt-out register, but there will be a bureaucratic difficulty with it. When it comes time for the organ donation, who will be present to inform doctors as quickly as possible that someone has opted out? I do not see how that will work in practice. All of this should have been teased out at the pre-legislative scrutiny phase.

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