Róisín Shortall (Dublin North West, Social Democrats) | Oireachtas source

I welcome what can only be described as long overdue legislation, which we in the Social Democrats are happy to support. This is an area very much in need of reform and tighter regulation. It is by no means a new issue. The first of four rounds of public consultation took place as far back as 2007. The first iteration of this Bill was published in 2009. It is frankly unacceptable that it has taken well over a decade for this legislation to reach the House. What was the hold-up? It is hard to understand when there is so much public support and support from both sides of this House. Advocates and stakeholders are certainly on board. The Opposition is eager to support the Minister in progressing this Bill. Pre-legislative scrutiny was waived two years ago. I fully accept this is a sensitive subject which requires delicate handling. Other countries are way ahead of us. In fact, 21 EU member states already operate an opt-out consent system and 30 have a registry of organ donors. While it is difficult to draw comparisons between member states and their organ donation systems due to the differences in legal and regulatory regimes, one can draw conclusions from the total number of transplantations. In that regard, Ireland is a laggard. In 2021, the number of transplantation patients in Ireland per million of the population was 40.6. This was significantly behind jurisdictions with more developed transplant systems such as Spain, at 99.7, France, at approximately 78, and the Czech Republic, at approximately 73. While some states fared worse than Ireland, many of them have a much lower economic per capitaincome than Ireland. The low level of transplant occurring in Ireland is only one reason this legislation should have progressed sooner.

Successive governments' inability to get this over the line created conditions for further scandals to take place. In the absence of clear legislation, many bereaved families have been failed by the State. Most recently, there was a scandal in Cork University Maternity Hospital, where the remains of 18 babies were sent to Belgium for incineration without the knowledge or consent of the bereaved parents. I do not think any of us can imagine what that is like if we have not had that awful experience. Imagine that trauma and grief being compounded by hearing this news about what happened to the remains of those babies. Imagine having to go public with your story to ensure no other parent must go through the same thing. Imagine having to carry the burden of ensuring this legislation does not slip off the political agenda yet again.

This was not the first scandal. Ireland has a long and, unfortunately, sordid history in this regard. It has been more than 20 years since the Dunne inquiry was established following the scandal in post mortem examinations and organ removal and retention at Crumlin children's hospital. It has been 18 years since the Madden inquiry into the policies and practices relating to the removal, retention and disposal of organs from deceased children. I ask the Minister again why it has taken this long. Why is this not already on the Statute Book? Everyone agrees that parents and guardians must be at the centre of decision-making and control in respect of their children's remains. The Madden report was clear on the root causes of previous scandals. There had been a lack of communication with parents as to why organs were retained in the first place, differing perspectives as to the significance of remains, and a legislative vacuum on the role of consent in post mortem practices. Those concerns are just as pertinent today as they were in 2005. For 18 years, we have known that the solution is clear and unambiguous legislation. We need laws that ensure any decision in relation to a child's remains is taken with the full knowledge and authorisation of the parents. I am pleased to see we have nearly reached that point and we are finally close to implementing the key recommendations of the 2005 report. However, it should be a deep source of regret and shame for the State that further scandals were allowed to occur while successive governments dithered over this Bill.

I will now focus on another important provision of this Bill, which is the introduction of a soft opt-out system of consent for organ donation. This change to the system aims to make organ donation the norm in situations where it is possible. Under the current system, you can express your desire to donate your organs by carrying an organ donor card or through your driver's licence, for example. However, while research undertaken in Ireland shows that 80% of the population supports organ donation, only around a third carry an organ donor card. Therefore, this shift to an opt-out system instead of an opt-in one is welcome. Although this change to presumed consent alone will not solve the issue of organ shortage, it sends out an important message. While the wishes of families will still absolutely be respected under this new system, the default expectation will have changed, which is an important point.

If we want to increase the number of organ donations in Ireland, the changes proposed in this Bill need to be supported by other resources, including increased ICU beds and staff. The awful example raised by another Deputy earlier of a lack of an ICU bed is a case in point. As things stand, the Irish health service operates with one third of the equivalent international infrastructure for organ donation and transplants. The inadequacy of this service receives little attention. There are several reasons, with the relatively low number of potential transplantations each year a driving factor.

Only approximately 1% of people die in circumstances where organ donation is possible and less than 10% of those who die in ICUs are potential organ donors. Between 2017 and 2021, there were only 393 donations from deceased persons and, on average, only 80 donations occur each year. However, despite these relatively small numbers, the Irish system still struggles, because for every donor identified, an ICU bed is occupied, a resource which is in very short supply. The length of time a donor spends in ICU can also be an issue due to the shortage of consultants and surgical theatre space.

On staff, specialist organ donation personnel are needed in every ICU department along with further ICU nurses and other ancillary staff. Of particular importance is the need for trained staff who can approach and support families of potential donors. Given the tragic circumstances surrounding most potential organ donations and the need for increased instances of donations, the significance of this work cannot be overstated.

These are just some of the infrastructure issues which must be addressed in parallel with this new consent system. We know there is significant unmet need in this area but we need to resource the service in order that it is enabled to meet this need. This is especially pertinent in respect of altruistic donations where a sudden uptick in donations could overwhelm the system.

Another important but often overlooked measure is need for a robust national public awareness campaign to support the introduction of the soft option system of consent. This will be vital to secure public buy-in and ensure these changes are not misinterpreted. It must be clearly and widely communicated that the wishes of families will still be respected under this new regime. Every effort must be made to ensure the public is not misled in any way in this regard.

Another area which must be addressed is the absence of collated organ donation data. Many countries publish annual potential donor audits and Ireland should follow suit in this regard. These vital data could be managed and published by Organ Donation and Transplant Ireland on an anonymised basis.

Separately, I am pleased to see this Bill will finally deal with anatomical examinations and the public display of bodies. The latter is sorely needed as there is currently no legislation governing these displays, meaning the State has no powers to investigate the origin of these bodies or the consent arrangements which apply in respect of some of these exhibitions we have seen staged here in this country over recent years.

On anatomical examination, this, unfortunately, is another area where the State does not have a very proud past. In 2014, we learned that almost 500 unclaimed infant remains were transferred to the medical schools at four universities from 1940 until 1965. Although this practice ended in the mid-1960s, we are told it was done in accordance with the Anatomy Act of 1832, an Act which will only be repealed by the passage of this Bill. Clearly, there is dire need for modern and robust legislation around the donation of bodies to medical schools, with consent as the defining principle.

I wish to acknowledge the deceased donors and their families who, in such tragic circumstances, have given the gift of life to, very often, complete strangers. It truly is an outstanding act of kindness and, as a State, we must do everything in our power to resource and support this remarkable service.

As the leaders of Spain’s organ donation service said in a 2019 paper in which they stated that low transplant numbers are because of governments:

...ignoring that the key to success lies within the healthcare system. We should never blame the population. If people donate less, it must be something we have done wrong.

This is an insight from the leader of one of the world’s most successful organ donation service. The Minister would do well to remember that.

I also repeat that I am very pleased, on behalf of my party, to support this legislation which addresses a number of very significant and outstanding issues. I am very pleased they are finally being dealt with.

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