I commend the 15 Deputies who tabled this motion on the very important issue of organ donation. It is a timely debate on a pressing health matter that requires concerted and early action on the part of the Government.
We need to address the question of organ donation and transplant in its entirety. There is, clearly, a severe shortage of organs for transplant. There is also a severe deficit in the infrastructure for delivering transplants, in terms of personnel, physical structures and funding. All of these shortfalls need to be addressed in a comprehensive manner.
Speaking last week at the Joint Committee on Health and Children, Professor David Hickey, director of the national kidney and pancreas transplant programme, identified the three big gaps in the current system. These are lack of organ donors, poor infrastructure in which our transplant patients are housed and a shortage of transplant surgeons. He said these gaps must be filled by means of increased organ donation, investment and legislation.
The motion focuses on what is called "presumed consent", a system where all persons are deemed to have opted in for organ donation and they opt out if they do not wish to be donors. As a matter of party policy, first adopted by the Sinn Féin Ard-Fheis in 2008, Sinn Féin supports the "presumed consent" or opt-out rather than opt-in system of organ donation. That reflects our desire to meet the need for greatly increased donations and transplants which, as the motion states, are life-saving and life-altering gifts. That desire is shared by all, whatever their views on the best model of consent for organ donation. I acknowledge that there are differing views on the issue but it is important that we say to each other, irrespective of our disposition, that we are all on the one page hoping to get to a much better place in this regard.
Underlying our position are a number of key principles which we believe should underpin the delivery of health services. We believe that everyone has the right to enjoy the benefits of scientific progress and its application without discrimination. We believe it is necessary to use regulatory policy to protect the public good including the safeguarding of public health and safety. Everyone has the right to participate in decisions affecting their health and to have their concerns heard. This means that individuals must be empowered to exercise control over their own health and to participate in the decision-making process around health law and policy and, very importantly, people should not be subjected to medical or scientific intervention without their informed consent.
We recall the pain inflicted and injustice done to families in the cases where the organs of children were removed without parental knowledge much less consent. On this basis, we believe that a complete and comprehensive public consultation should take place on the issue of organ donation, in order to canvass clear public and professional support for a policy of presumed consent. We have called on the Irish Government, British Government and Assembly Executive to ensure that the principle of presumed consent will operate only with regard to organs available for donation to other patients and will not extend to reproductive organs, other tissues and organs for research; presumed consent will operate based on the idea that everybody carries a donor card; all persons who have the ability under the current opt-in policy to provide consent shall have the ability to dissent from presumed consent, that is, those who are over the age of 16 years and with legally recognised mental capacity; for children under 16 years of age and those adults lacking legal capacity to consent, the next of kin should retain full control over consent, and the opt-in requirement should remain in place; it should be the responsibility of the relevant health bodies to inform comprehensively the public of a presumed consent policy and an information booklet fully outlining the rights of potential donors and their families should be sent to every household and educational institution - this should include the ability to consent or dissent, how to register officially and opt-out of donating, the legal position regarding children, how organ donation works, how the new process will work in practice and safeguards that will be put in place to protect the public; and an all-Ireland national register on withholding consent to organ donation should be established. This would be automatically accessible to the organ procurement services and managed by the health departments.
The State currently operates under an opt-in scheme. There is no legal restriction on the age at which one can choose to donate organs in the event of one's death but one must carry an organ donor card should one wish to donate, or otherwise register one's willingness to opt-in with a voluntary organisation such as the Irish Kidney Association.
There is no legislation governing organ donations and the law regarding consent and who can provide it is, therefore, unclear. There is currently no legal definition in the State of what constitutes informed consent. In some cases where there is no registered opt-in the medical team may request the next of kin to donate the organs of a deceased person but there is no law governing this practice. Generally, the consent of the next of kin is accepted as valid and a refusal by the next of kin is not contested. Those over the age of 16 may consent to medical treatment and organ donation on their own behalf. Where a person is under this age a medical professional can take consent from the next of kin.
All organ donations are coordinated by the national organ procurement service at Beaumont Hospital, Dublin, under the authority of the Department of Health. An opt-in system also operates in the Six Counties. All organ transplantation within the North is governed by the British Human Tissue Act 2004. Transplant NI is accountable to the Six Counties Minister for Health in the Assembly and to the British Parliament through the English Department of Health.
Transplantations occur when a person has died in hospital, usually when brain stem death is confirmed using strict criteria. Consent is needed – either given previously by the deceased making her or his wishes known or being a registered donor through the NHS Organ Donor Register – and a nominated person or qualifying relative can also consent on the person’s behalf. As in the Twenty-six Counties a child of 16 years of age will have capacity to consent to organ donation. Where they are under 16, they are governed by the Gillick competency rule which stipulates that as a matter of law, the parental right to determine whether or not their minor child below the age of 16 will have medical treatment, or opt-in to organ donation, terminates if and when the child is able to understand fully what is proposed. However in practice it is generally the family of the child who have legal power to donate organs.
Research published in 2009 in the British Medical Journal found that donation rates do increase after the introduction of presumed consent systems. That position has been contested in terms of other jurisdictional experience and very particularly to members of the Joint Committee on Health and Children last Thursday by professionals who have a particular and clearly expressed view. However, the British research seems to support the presumed consent approach. The same research showed that legislation, availability of donors, organisation and infrastructure of transplantation services, investment in health care and public attitudes to and awareness of organ donation all play a role.
This latter is an extremely important point. It is far from a one-dimensional issue. Changing the donor consent system is not by any means a panacea. It may form a key part – but still only a part – of a more comprehensive approach. That was well put by the leading transplant surgeon in the country, Professor David Hickey, when he addressed the Joint Committee on Health and Children. He said:
The other area that will certainly help increase donation rates has been Joe Brolly’s initiative re the so called ‘presumed consent’ or ‘opt out’ option. Much has been said about the unfortunate wording of presumed consent, and I believe that this has to be removed from the lexicology. The presumption should be that the medical and nursing staff bring the topic to the awareness of the potential donor family to allow them the opportunity to think about this process and decide whether it is suitable for them. It must also be remembered that this is a service to the donor family and immense consolation can be derived from donating. Conversely there is also immense desolation derived from not being afforded the opportunity...
However, it has to be accepted that in the countries that have seen a significant increase in organ donation and this increase has been attributed to the adoption of presumed consent, in reality has been the result of massive investment in both physical and personnel infrastructure.
I wish to lay emphasis on that holistic approach that Professor Hickey has outlined and was at pains to point out to us as members of the Joint Committee on Health and Children last Thursday.
I also pay tribute to Joe Brolly's powerful example and his advocacy for the importance of organ donation, in his instance a living donation which, all too sadly, failed in the transplant that proceeded. He is a voice and an example that needs and deserves all our respect.
Again, I commend the proposers of this motion, which we in Sinn Féin will support. We must address all aspects of this issue, most especially the need for greater resources to be devoted by Government for organ transplant. This would result in significant long-term savings for the State but, far more important, it would save and enhance the lives of so many who would benefit from it.