Mr. Mark Murphy:

I thank the Chairman and members of the committee for giving the Irish Kidney Association, IKA, the opportunity to address it all and share our observations and suggested amendments to the Bill in question.

The IKA was formed 41 years ago to advocate for patients, and their families, affected by kidney failure. Our first mission was to introduce what was then the kidney donor card, raise public awareness about how kidney donation works and how it can be the gift of life. As transplantation progressed to include more organs the kidney donor card became the organ donor card more than 20 years ago.

The role of the organ donor card has always been to prompt the organ donation conversation within families as informed consent is key to the success of the process. Technology has allowed us to reach beyond the traditional card, as Mr .Watt mentioned, and we now also have a digital organ donor card app. The same principle applies in that the app is there to promote conversation and as a reminder of the decision made.

For more than a decade we advocated for the introduction of an organ donor register. This would offer a very clear call to action for the public and can be very easily established in such a way that facilitates the organ donation conversation.

With a register, Organ Donation and Transplant Ireland, ODTI, would have for the first time a central record of an individual's decision to be an organ donor. This would be consulted when a potential donor has been identified and knowing that a loved one had proactively recorded a wish to be an organ donor makes the family decision to consent a much easier proposition.

In putting an emphasis on soft opt-out with family consent, this Bill is misleading the public as it implies a change of practice, whereas the reality is that the practice stays the same. Currently, a potential organ donor is identified, the family is approached and consent for retrieval is either given or not. Under the proposals in this Bill, the public will have the opportunity to opt out of organ donation and if people do not opt out, they will be considered potential donors but the family will still be approached for final consent. Where is the difference?

We want people to say "Yes" to organ donation but just as important, we want their families to also say "Yes". How do we do this? We encourage conversation. The public will only look at the headlines of this Bill and see that if they do not opt out then they are considered potential donors, the call to action will be removed along with the prompt for family conversation. Do not just take my word for it as there are people a lot more learned than me who will say the introduction of a system of opt-out will not affect growth in deceased donors. A paper entitled Comparison of Organ Donation and Transplantation Rates Between Opt-out and Opt-in Systems, which was published this year states, "our data demonstrate no significant difference in deceased donation or solid organ transplantation activity between opt-out versus opt-in countries". This other barriers to organ donation must be addressed even in settings where consent for donation is presumed. The author concluded that greater emphasis on education and informing the general population about the benefits of transplantation is the preferred way to achieve an increase in organ donation. These findings have important implications for transplant clinicians and health policymakers like this committee when considering the merits of organ donation strategies.

Another paper entitled Opt-out Legislation, the Mysterious Viability of the False, was written by Dr. Rafael Matesanz and Dr. Beatriz Domínguez-Gil, the retired and current leader of the most successful organ donation organisation in the world, Organización Nacional de Trasplantes, ONT, in Spain. It states:

In summary, the evidence does not support that shifting towards presumed consent 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 and poor contribution from society. It results from 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 from the leaders of the donation organisation in the most successful country in the world in this practice.

Head 19 of the Bill focuses on an opt-out only register and is a major missed opportunity. Give the public an opportunity to opt in also. The register would go from being viewed negatively by wider society to being a useful call to action and decision aid for families when their consent is sought. The United Kingdom has had a register for 25 years and it also has detailed donor audit reports, which we do not, that show the evidence of the value of the register and the role of specialist nurses for organ donation. Again, we have very few of them. Only 30% of families consent when no specialist nurse is involved in the formal organ donation conversation with the family. That increases to 57.5% consent when the specialist nurse is involved but the potential donor has not signed the donor register. This increases again to 94% of families consenting to organ donation if a specialist nurse is involved and the potential organ donor has signed up to the register. It is hard to argue with such statistics, which is raw evidence for the committee.

With respect to developing a "Yes" or opt-in register we are actually already in a very strong position, with 957,000 people who have the new format driving licence or driving permit choosing to have the code 115 added to their licence to indicate their wish to be an organ donor. These data can easily be transferred to the Department of Health if the desire is there to make it happen. We have a number of edits for the committee to consider. My colleague, Mr. Whelan and I, worked on this for quite some time. We have plenty of supporting materials that we believe will help the committee make a truly informed decision on the future of organ donation in Ireland. I thank the committee for not presuming our consent to this Bill.