Human Body Organs and Human Tissue Bill 2008: Second Stage.

Wednesday, 1 October 2008

Seanad Éireann Debate
Vol. 191 No. 2

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Question proposed: “That the Bill be now read a Second Time.”

An Leas-Chathaoirleach: Information on Paddy Burke Zoom on Paddy Burke I welcome the Minister of State, Deputy Moloney, to the House.

Senator Feargal Quinn: Information on Fergal Quinn Zoom on Fergal Quinn I thank the Minister of State for attending the House for this debate. The objective of the Bill is to save lives. Ireland has a rate of organ donation approximately half that of Spain, which has had what is termed a “presumed consent” system in operation for some years. There is no legislative framework in Ireland governing the use or withholding of consent in regard to the donation of body organs; the only other country that does not have it is Malta. This was highlighted in the report of Dr. Deirdre Madden on post mortem practice and procedures, published in 2006.

This Bill endeavours to tackle this issue by providing that consent would be presumed for certain permitted activities. In effect, the Bill would reverse the current position whereby one must opt-in to consent to organ donation and, under its provisions, if someone does not withhold consent, it will be presumed that person had consented. Such systems are currently operating successfully in a number of other European countries. I am advised that approximately 28 countries have some form of a system of presumed consent in operation.

I will attempt to explain the reason I am proposing this Bill; there is a personal background to it. I have known, as perhaps we all have, a number of people who have benefited from receiving an organ by the consent of the family of a deceased person. In some cases this has been the gift of life, in others it has improved their way of life. I will tell the House about the case of one young man, the son of a person who worked with me in Superquinn a few years ago. David Ryan was his name. He was 19 when he learned that the problem in his heart could only be solved by way of a heart transplant. He waited for a suitable donor and then after 18 months he and his family learned that a suitable match was available.

During the 18 months while they waited for a donor heart and during which time David got weaker, his mother, Margaret, contacted newspapers to highlight the need for organ donation. She ran a campaign with her colleagues and customers to promote the donor card scheme. On Good Friday 2000, when David was 20 years old, a donor was found and the operation took place. His mother, Margaret, told me of the joy when he was coming out of unconsciousness. She remembers it well - I talked to her again about it yesterday. David was unable to speak at that point but wrote “21 soon” to remind her of his upcoming birthday. Within two days he was on his feet, chatting, well on the mend and taking an interest in his new life. His mother described how even on that Easter Monday David watched the races from Fairyhouse on the hospital television and he appeared well on the road to recovery. His mother, other family members, friends and work mates were overjoyed.

Unfortunately, two days later, on the Wednesday after Easter, the transplant heart was rejected and David died on the following Friday. The medical advice was that the 18 month delay in waiting for the transplant probably contributed to his death. His mother, having had [119]time to discuss it with David, was aware that he was happy to have his organs donated to help others. Margaret told me that she feels somewhat comforted in the knowledge that two people have a better life because of David’s donation. His eyes went to two people, one was a 25 year old and the other a 75 year old man.

At the same time in the same supermarket, two others were waiting for organ donations. These two colleagues were seeking kidneys and I saw their health deteriorate. One was Karl Carter, to whom I also spoke yesterday. He has successfully received a good match and is now well recovered. The other person is now waiting for her fourth kidney and has to spend a great deal of time on dialysis.

All that occurred eight years ago. Since then I have taken an interest in the whole question of organ donation. I was impressed at the interest in the subject and the work done by Dr. Patrick Condon in Waterford. He initially drew my attention to the different levels of organ donations in various countries. I learned that the number of organ donations per head of the population is much higher in Spain than it is in Ireland. The figure for organ donation in Spain is almost double the figure here. Since 1979, however, Spain has had a system which is the reverse of the Irish one; it is called a system of “presumed consent”. This means that when one dies and if one is a suitable organ donor, it is presumed that one’s organs can be transplanted to another person unless one has made it known that one does not wish that to happen. It is not only Spain that has that system, different variations and versions of it operate in different countries. Thanks to the good work of the Irish Kidney Association and the Irish Donor Network, Ireland has a respectable rate of organ donation, well ahead of that of Britain, which like us does not have a system of presumed consent.

This subject is worthy of more open discussion. The Bill I have put before the House takes into account many of the concerns of citizens about the implications of such a proposal. Some 67% of the Irish population support organ donation. They are willing to donate their organs to help or save the life of somebody else, but only 29% carry a donor card and that is the percentage who have accepted a donor card. When I went to get mine the other day, I had to search for it because it is eight years since I had it. Some 600 people are waiting for an organ donation in Ireland and 40,000 people are waiting for one in Europe. In Britain three people per day die as a result of not having received an organ donation.

I mentioned Karl Carter, a young man, who got an organ donation. He reminded me yesterday that donating two kidneys not only saves the lives of two people, it saves the lives of four people because the two people who each get a kidney come off of dialysis and two other people are able to go on to it. It seems a shame that there are people waiting for an organ donation and transplant and are unable to get it because our law has not gone far enough to ensure what we are setting out to achieve in this Bill.

I will refer to some aspects of the Bill that deserve mention. The central part of the Bill is section 3. I will summarise what it states and not mention all the legal terms covered in it. It provides that all persons shall be deemed, unless they have withheld consent, to have consented to permitted activities for scheduled purposes as set out in the Act. They are important elements because some people are concerned about the provisions of this Bill, and I can understand their cause for concern. They may believe that the legislation can be used for various other purposes which might not be acceptable.

I spoke to one mother whose baby died very early on. She informed me that she would have loved to have thought that, in death, her child might have helped someone else. However, she also indicated that she would have been extremely concerned if her consent had not been requested, if something had happened about which she did not know or if, as happened in the [120]past when there was no legislation in place to cover such circumstances, part of her baby’s body had been sold to a company for use.

The Bill appears to be quite involved because it focuses, in clear terms, on matters such as permitted activities. The objective of the Bill is to assist doctors who identify possible donors in circumstances where such people’s organs cannot be harvested as a result of delays that occur. Let us consider what could happen if a doctor could rest assured that he or she could harvest an organ and save a life without breaking the law.

In the Bill, the aim is to ensure only permitted activities would be allowed. On first reading the Bill, some people were upset by the use of the word “storage” because it seemed to suggest that the possible aim is the storage of bodily organs. That is not the intention. I understand that even if organs are only being kept overnight, the term “storage” must be used. However, the objective is that there will always be a recipient for an organ before it is harvested. It may be the case that the relevant provision may have to be tightened up to overcome difficulties in this regard.

Another term which gives rise to concern is “commercial use” but this is not used in the Bill. This term is purposely not used because it is not a permitted activity. It must be remembered that the Bill is almost back to front in nature because only permitted activities are allowed. We did not include the term “commercial use” because we could not find a way to do so. There is a need to be very careful when dealing with this matter because we would not want to restrict the transfer of organs, especially in circumstances where, for example, the air ambulance employed for the purpose was owned by a commercial concern.

To make the job of medical professionals hoping to encourage the donation of organs easier, the sanctions in this regard are expressed in the context of civil rather than criminal liability. The concept behind this is to ensure that people would not be accused of being involved in criminal activity.

There are many worthy aspects of this matter which deserve to be debated. The Bill has been put forward for the purpose of saving and improving lives. It may not be perfect and I am sure there are parts of it that could be changed. In that context, it could be amended on Committee Stage. The Second Stage debate in which we are engaged is to ensure people have open minds in respect of this matter and that the general themes are discussed. I hope the legislation will be accepted and that we will be able to improve it on Committee Stage to alleviate people’s concerns. Those who expressed such concerns in the past would welcome the opportunity to ensure the Bill is improved. This debate will facilitate discussion of the legislation and the matters to which it relates. I urge the Minister of State and Members to keep an open mind with regard to the topic under discussion. I also urge the Minister of State to accept the Bill.

Senator Joe O’Toole: Information on Joe John O'Toole Zoom on Joe John O'Toole I congratulate Senator Quinn on the amount of work he invested in preparing this legislation, which is very important. It is my privilege to second the Bill.

I should declare a related interest in that my sister has been the national kidney and transplant co-ordinator for many years. I am, therefore, quite familiar with many aspects of this matter and I know families that experienced great joy and others who underwent great bereavement. The circumstances dictate that one family donates while the other receives. I have often thought that the people who work in this area must deal with the extraordinary heights and depths of emotions, namely, joy and bereavement. Their job must be very difficult.

I completely support what is proposed in the Bill. For many years, people have ticked the box on the back of their driving licences to indicate their willingness to donate their organs. I [121]have argued on numerous occasions that we should do what Senator Quinn’s Bill proposes, that is, introduce the notion of presumed consent. The latter represents the way forward.

I should have welcomed the Minister of State, Deputy Moloney, and wished him well with his portfolio. I am aware of his concerns regarding matters of this nature because we discussed them in the past. I apologise for not welcoming him at the outset. If the Bill is not to the exact liking of the Department in every detail, I would be happy if the Minister of State would say that, indicate the changes that need to be made or commit to introduce parallel legislation. However, I ask him to concede that there is a need for legislation in this area, if not along the precise lines of the Bill then along similar lines.

There are many levels between where we currently stand — with no legislation — to a position of presumed consent. If the Government is not prepared to go as far as Senator Quinn wants it to go in his Bill, which, in my opinion, represents the correct way to proceed, there is also the option of considering the notion of a required request. Where a person with healthy organs is fatally injured, there should be a requirement that his or her family should at least be requested to donate those organs. When a tragedy occurs and when a family is in the midst of grief, it does not cross the minds of its members that there is one small positive they can take from their bereavement. If they had been asked, many families would have been happy to accede to a request to donate their loved ones’ organs. If the Bill, as proposed, were accepted, there would be no need for required requests because people would be asked the relevant question automatically.

In certain countries, presumed consent of the type proposed by Senator Quinn obtains. Let us consider the reality of what happens there. Discussions regarding organ donation often take place in or adjacent to intensive care units in hospitals and involve families that are grieving. There is usually a great deal of emotion and activity involved. To my knowledge, even in circumstances where it is widely known that a person has consented to his or her organs being donated, the people present to harvest those organs will invariably discuss the matter with the next of kin before proceeding.

Senator Quinn and I are not proposing that someone’s next of kin should be pushed out of the way and that the relevant medical professionals should then harvest whatever viable organs remain. Those charged with harvesting organs go about their work in a sensitive, caring and understanding manner. They work in a way that draws the next of kin and those who are grieving into the process. I have met people who stated that they never got over the shock or grief of losing their son or daughter and that there is never a day on which they do not remember him or her, but that at least they receive a card from the transplant society or unit or from the parents of the person who benefited from the donation of their son’s or daughter’s organs, thanking them once more. Each year they are reminded that there are people with their son’s kidney, eye or otherwise. There is some element of consolation there. Of course, it is poor consolation for the loss of life but at least there is a feeling that they, or their dead child, has given something to society which lives on in a positive way.

A very important part of drawing in the next-of-kin into these situations is the gift element. Although the next-of-kin are expressing their grief and shock about the death, it is helpful to allow them to respond positively to the request of the person who has died. These are important elements which come within the remit of Senator Quinn’s Bill. As he said, the Bill is written in cold, technical language but we need to think about how it is implemented. I am glad he gave the examples of the gift of life given to people because we have seen that work.

A very good friend of mine from the Minister of State’s constituency had kidney failure and was on kidney dialysis for many years. He finally got a kidney but it was a flawed and it had to be taken out. We were all devastated. He got a second kidney but it was rejected. Again, it [122]was devastating to see this happen. He got a third kidney more than ten years ago. It is working perfectly and he is living a very healthy life, playing golf every day. That was a very unusual case but his life has changed completely.

It is important the Minister of State speaks in positive terms in his contribution. I would also like to hear him speak about the importance of a public awareness campaign. The Department is doing an audit of the harvesting, transplantations and donations taking place in Ireland currently. The situation in that regard is very healthy but it is important that this debate receives some recognition in the Department and that there is increased public awareness and education on the importance of a community, Government and political commitment to the elements proposed in this Bill, even if the Minister of State does not accept the exact wording as outlined by Senator Quinn.

There can be no argument against what Senator Quinn is trying to achieve. I understand people might want to amend the Bill or deal with it differently. There is never only one right way to find a resolution; there may be 24 right ways. I am not putting words in Senator Quinn’s mouth but I believe he wants to hear, and I certainly want to hear, that the Government will either accept this Bill or amend it.

Let us not leave the vacuum which currently exists and which should not be there. We need to legislate for this issue. The legislation is important not only for the reasons outlined by Senator Quinn but to show that this society cares about these issues, will legislate and deal with them and considers them important in our community. As long as we leave the vacuum, the finger can be pointed at us and people can ask what legislators are doing about it. I was not aware of the fact that Malta is the only other country in the EU which does not have legislation in this area. That is a sign for us to act quickly.

We are putting an issue of concern to many people on the agenda and are bringing it to the fore in our Legislature. It is an issue which in no way could be seen as party political or as divisive. I presume Members on the other side of the House would, in general terms, take a similar approach to us. It is important that message goes out. There may be slight differences in emphasis here and there but we want to encourage organ donation and ensure we facilitate it in legislation and that it comes into operation. That is what this is about and the reason I ask the Minister of State to support Senator Quinn’s Bill which I feel privileged to second.

Senator Geraldine Feeney: Information on Geraldine Feeney Zoom on Geraldine Feeney I welcome the Minister of State, Deputy Moloney, and Senator Quinn’s Bill. Like Senator O’Toole, I compliment Senator Quinn on his initiative in drawing attention to this very important issue. As he said, it is all about saving and maintaining lives. It is a very complex issue when one gets down to it because it involves emotion, sensitivity and the legal aspect, not to mention medical politics.

When preparing for the debate, I remembered coming into the House six years ago as a novice Senator to speak on stem cell research. I have been paying the price for that for six years. I was obviously on a side on which there were not too many other people. Perhaps I was a little bit liberal; I was certainly innocent. I feel much safer speaking on this Bill because I do not believe the big sticks will be out there to beat me.

The Government, through the Minister for Health and Children, is in the process of preparing a Bill to come before both Houses which will deal with all the issues Senator Quinn raised as well as other issues. It will cover the regulation of the removal, retention, storage, use and disposal of human tissue from deceased persons and consent for the use of donated tissues from living persons for the purpose of transplantation and research.

[123]The Bill will also look at the options Senator Quinn outlined, namely, opt in, opt out and mandatory choice. The Minister has met many interested groups but she must put the issue into the public domain for intense public consultation and debate. Part of the editorial in today’s edition of The Irish Times supports what Senator Quinn proposed while one of the letters to the editor almost questions whether this is the right way to go. There are different views and it is right that the Minister engages in a consultation process and listens to the debate. Senator O’Toole, more or less, said the same to the Minister of State.

I will not go through all of what I have written because much of it is jargon covering what the Government proposes to introduce in its legislation and the Minister of State will deal with that. It is very important to bring a human aspect to such a debate. If one can humanise an issue such as this, one surpasses politics. I am very close to where Senator Quinn is coming from and agree with him that it is all about maintaining and saving lives.

Approximately four years ago, through politics, I was involved in a very sad case of a young woman in her early 40s who came from a very troubled background and who had attempted self-harm on two occasions. She attempted it on a third occasion by taking paracetamol with whiskey. She was a young professional woman, an accountant, and although she had come from a very troubled background, she was very bright and intelligent and had put herself through college. She turned out to be a wonderful young professional woman. She was admitted to a Dublin hospital and it was discovered her liver was severely damaged. Her family was called in — it was at this stage I was invited to become involved — and told that because she had self-harmed, she would not be looked on as an ideal candidate for a liver transplant. She was 42 years of age and was on her death bed pleading that she wanted to live. She was put on the waiting list, but did not live long enough to be called.

It is important these stories are told. There is a belief among the medical profession, probably because organs are so few and precious, that there must be criteria with regard to who will or will not receive a donated organ. However, it is difficult to watch a young woman lying in a bed with her family around her. The family of that young woman is still traumatised four years on and I am sure their pain will be as real in 44 years’ time.

Like Senator Quinn, I have a story to tell about organ donation. My brother-in-law in the US had a liver transplant 14 months ago. He was the father of three young children from seven years of age down to two years of age and was at death’s door. The whole family was so anxious that I inquired in Dublin whether a transplant could be done any quicker if he returned to Ireland, but in the middle of the night he got the phone call and he got to a hospital. Now, 14 months later he is doing remarkably well. He was home in Ireland during the summer and it was great to see him playing football with his young children again.

My brother-in-law’s story was broadcast in the US as part of a breakfast TV programme because the mother of the young male donor, who was involved in a road traffic accident, wanted to meet the recipients of her son’s organs. Just as in the story told by Senator Quinn, the two families have come together and send birthday and Christmas cards to each other, although they come from very different backgrounds. There is great love and affection between them. There is gratitude on the part of the recipient for his extended life and joy in the donor family because they have contributed to saving lives by donating their son’s organs.

I urge Senator Quinn to keep this valuable Bill on the agenda, but to wait and see what may be introduced by the Minister for Health. We are close on the issue and may find common ground, as happened previously on another Bill with which Senator Quinn was involved. I thank him for bringing his important Bill before us.

[124]Senator Frances Fitzgerald: Information on Frances Fitzgerald Zoom on Frances Fitzgerald I welcome the opportunity to speak on the Bill and welcome the Minister of State to the House. I commend Senator Quinn of the Independent Senators for placing the Bill before the House and for using his Private Members’ time to discuss such a vital issue of life and death as the area of organ donation and transplantation.

We need more debate on this area as it can be a frightening area for people to think about. I agree a public awareness campaign is necessary, as well as further debate and discussion. It is a difficult issue to think about at any time, not just in a crisis situation. Research shows that when most people are consulted, they say they would be very happy to agree to be a donor and international research shows there is much good will and that donating is something people want to do. However, they do not always fill out the consent forms or tick the box on their driving licences.

A major 2006 international study found that presumed consent can give rise to a 25% to 30% increase in organ supply. This fact is quoted in the editorial in today’s The Irish Times. Senator Quinn, by raising the issue here, has already generated media debate, as can be seen in today’s editorial and letters page. The editorial stated:

Today some 600 patients in Ireland, many with seriously life-shortening conditions, are waiting for transplants of kidneys, hearts and other organs. Up to a third of those with cystic fibrosis awaiting lung transplants will die before a suitable donor becomes available.

As we know, many of these are young people. Our rate of donation is relatively high by international standards, but there is great scope for improvement.

I said earlier that many people are frightened about this issue. We need to provide detailed information on donation to the public. If we support Senator Quinn’s Bill there will be questions, as Senator O’Toole said, with regard to how the procedures will be carried out in hospitals, the kind of work that will be done with the families and the type of counselling and support that will be available. These issues must all be discussed.

A letter in The Irish Times today relates to the Spanish situation, where there is presumed consent. The letter writer makes the point that the Spanish policy was developed by the establishment of a transplant authority independent of all hospitals and consultants and that it set up a system of transplant co-ordinators between hospitals whose role was to counsel the families of recently deceased people in an appropriate and sympathetic manner. This approach must be an important part of any change we make here. Also, financial costs to the hospitals were dealt with by the independent authority. Financial costs are a factor and must be considered. Organ donation rates increased by 50% on the introduction of the independent transplant authority. There has been significant change in organ donation in Spain, first because it did as Senator Quinn suggests regarding presumed consent and then it developed how the programme would be run. We must take those lessons on board.

Our debate is important. I regret it looks like the Government will not support this Bill, but I welcome the news that the Minister intends to introduce legislation. I hope it will lead to progress. Perhaps the best thinking from Senator Quinn’s Bill will be taken on board by the Government. I am happy to support the general thrust of the Bill, namely, the idea that presumed consent to donate organs should exist and that if people do not wish to donate organs, they must withhold consent. This is common sense and we can learn from other countries. The objective behind this concept is to increase the amount of organs available for transplantation. Lives could be saved or improved dramatically by this measure. It is dreadful to think that people who die in accidents who would have been happy to donate their organs had not signed consent forms or it was not discussed with their families.

[125]While I welcome the overall objectives of the Bill, I would like to make some observations and pose some questions. These matters are not insurmountable and could all be dealt with on Committee or Report Stage. I note in particular the concerns expressed by the Parents for Justice group. That group has been through a traumatic experience in terms of organ retention and is very concerned with regard to the removal and storage of organs. Those issues must and can be addressed. I wanted to mention the matter because they have e-mailed every Senator about it and we have to show sensitivity to their experiences. In regard to the issue of storage, for example, I am aware that a large proportion of donated organs are not used. Clearly, the issue of what happens to these organs must be addressed.

While I appreciate that the Bill respects parental authority and makes no effort to usurp it, I wonder whether the presumed opt-in should begin at a certain age. A family may not have considered opting out on behalf of a young child who died suddenly but there would be presumed consent in that instance. I am not completely sure about this issue but a debate which engages families is needed. We also need to raise public awareness on the implications of these proposals.

It will be important that good practices are followed in hospitals. Hospitals may be failing by omission in terms of not discussing the issues with families. Equally, a situation could arise as a result of insensitive handling. We need to have regard for Spain’s emphasis on best practice when we deal with people facing these circumstances. Senator Quinn might also comment on how organ donation will be dealt with in cases of clinical death.

While I agree with the thrust of this Bill, any measure of informed consent should be supported by a framework which enables the maximum number possible of successful organ transplants. I support the advancement of the Bill to Committee Stage and have briefly outlined the areas which I would like to discuss further. I thank Senator Quinn for putting this matter on the political agenda and urge the Minister of State at the Department of Health and Children, Deputy Moloney, to respond positively. I hope we can bring about an increase in donations and greater public awareness of the issues involved.

Minister of State at the Department of Health and Children (Deputy John Moloney): Information on John Moloney Zoom on John Moloney I thank Senators for the welcome they have extended to me. I want to make it clear that no political divide exists on this issue. At a time when our attention is on the economy, I commend Senator Quinn on his focus on saving lives. Differences of opinion may exist in one or two areas but I hope that, through this debate, Senators and the Minister for Health and Children, Deputy Harney, can work out the finer details and produce a Bill that meets everybody’s expectations. I thank Senator Quinn for introducing this Bill and for initiating the debate on this most important issue. My colleague, the Minister, cannot attend this evening but she has asked me to assure the House that she takes a great personal interest in the issue and is most anxious to hear the views of Senators and the general public.

On 23 September, the Government approved the preparation of the general scheme and heads of a human tissue Bill to regulate the removal, retention, storage, use and disposal of human tissue from deceased persons and consent for the use of donated tissue from both living and deceased persons for the purpose of transplantation and research. I have heard the story of David Ryan and have come across similar cases in my own constituency involving Harefield hospital. Processes which appeared to be successful had failed by the following week. As with Senator Quinn’s Bill, the legislative proposals approved by the Government will address hospital post mortems, which are voluntary procedures, as distinct from coroners’ post mortems, which are part of the legal process of determining cause of death. The Senator’s Bill encompasses consent for organ donation and I appreciate this is a driving force behind the [126]tremendous work done by him in progressing his Bill. The Minister also proposes to address this in the Government’s legislation.

The Senator advocates moving to one of the two major systems for demonstrating consent for transplantation, the opt-out model, whereas the Minister is keeping an open mind on either opt-out or the other side of the coin, the opt-in model. There is also a third option of mandated choice, which is a variation of the opt-in system. These three models will be further examined by officials and the Minister has made a commitment that they will be subjected to specific public consultation. She has met various groups which have argued for one or other of the consent models and, as I have explained, is keeping an open mind until the public consultation has taken place. Preliminary public consultations were held last year by the Department of Health and Children on the general legislative requirements in the area of human tissue but few responses addressed the question of consent for organ transplantation in any detail. A more targeted consultation process with specific emphasis on consent for organ donation is now required. The first draft of the general scheme of the Bill will be prepared on the basis of the opt-in system but the Minister has made it clear that the reason for this is to offer an initial focus for public debate. Until the consultation has concluded, all three options will remain on the table and will be given equal consideration.

I will now describe the different models for demonstrating consent for organ donation. The opt-in system requires the consent of the individual or next of kin before organs or tissues are removed after death. This system is currently in place in Ireland, the UK, the Netherlands, Germany, Australia, New Zealand and Canada. The opt-out system is sometimes referred to as presumed consent because it presumes that all citizens consent to donate their organs after death unless they have specifically expressed a wish to the contrary. This model has been implemented in France, Italy, Spain and most other EU member states. The UK, which passed a human tissue Act in 2004 based on the opt-in system, is now looking at the implications of changing to an opt-out model, but I understand that the debate has not yet been concluded.

One of the points to bear in mind about the opt-out system is that relatives of the deceased are approached as part of the donor screening process to seek a medical history of high-risk behaviour. As part of this consultation, in most countries where the opt-out model is used families are given the opportunity to register an objection to the donation if they wish. Even where a state has the legal right to take organs, I understand that few hospitals will disregard the wishes of the bereaved family if doing so would cause them significant further distress at an already traumatic time.

This blurs the distinction between opt-in and opt-out countries and suggests other reasons for the difference in donation levels. I caution Senators that the Department has yet to consult the Attorney General on the substance of the proposals and it has been suggested by some that the opt-out model may have constitutional or other legal implications. Moreover, preliminary research by officials suggests that the consent model is not necessarily the determining factor in improving donation rates. Donation rates vary widely internationally and while Spain, the country with the highest donation rate, has followed the opt-out system, Ireland already has a higher donation rate than many other European countries which have adopted the opt-out model. Indeed, I have been told that the person responsible for introducing the opt-out model to Spain in the 1970s does not attribute the success of the Spanish organ donation system to this model but to other measures taken during the following decade.

Factors which may be of equal or greater importance to improving and sustaining high organ donation rates include the organisation of transplantation services at a local and national level, national protocols, public education and awareness and more targeted co-ordination within hospitals and between hospitals and bereaved families.

[127]To date there has been little sustained public debate on the model of consent for organ donation. The issue is of such importance and any change to the current system would be so radical that the Minister is firmly of the view that the public must be given a chance to have their say. For this reason, as I have said already, the Minister has asked me to acknowledge the service done by Senator Quinn in initiating his Bill and starting off the public debate. That in itself underlines the Minister’s interest in and awareness of Senator Quinn’s aims. Whichever model is chosen, the Minister and her officials are determined to provide a statutory basis for the donation process to support and protect the altruism of organ donors and their families, together with staff working in transplantation services, and to promote and increase organ donation.

I have already referred to the further option of mandated choice, sometimes referred to as required consent, whereby individuals must be asked at a specified point — such as when applying for a driving licence or making tax returns — to decide and record their position on donation of their organs after death. Under certain circumstances the individual, or where appropriate their next of kin, may also be asked to decide on this matter during a hospital stay. The mandated choice model operates in some parts of the United States and elements of the model are being implemented in other jurisdictions in various forms. The Minister is of the view that if the opt-in model is the one finally chosen, the option of combining this model with elements of mandated choice would provide a very useful adjunct to transplantation services in promoting donation and increasing the number of donated organs and, ultimately, the number of lives saved.

There is another feature of the Minister’s proposals that I wish to bring to the attention of the Seanad. In Ireland the current position is that when a person has indicated his or her willingness to donate organs by carrying an organ donor card, or when the individual’s wishes are noted on a driving licence, the consent of the next of kin is always sought and the wishes of the next of kin, in effect, override those of the deceased. The public consultation conducted last year by the Department supports a move to change this to give legal precedence to the expressed wishes of the deceased. As with the opt-out system, no one will force a hospital to accept an individual’s organs if doing so will cause significant added pain to a grieving family. Nevertheless, the Minister believes that giving legal status to the stated wishes of the organ donor will encourage a change in mindset so that the donation of organs is regarded as the norm rather than the exception.

I will outline some other elements of the Minister’s legislation. The policy context behind the proposals lies in the discovery that post mortems had been performed and organs retained without permission, as documented by Dr. Deirdre Madden in her report into post mortem practice and procedures. A primary purpose of the Bill is to implement the key recommendation of the Madden report that no hospital post mortem examination should be carried out and no tissue retained for any purpose whatsoever without authorisation. I do not believe Senator Quinn had that specific area in mind, but I mention it for the purpose of full debate. This is perhaps the only element of Senator Quinn’s Bill on which the Senator and the Minister are in disagreement. If I am reading it correctly, it seems the Senator’s Bill as drafted would introduce a system of presumed consent for all matters relating to human tissue, including post mortem examination and retention of organs. Following the traumatic discoveries in recent years which gave rise to the post mortem inquiry, the Minister does not believe this move would be in keeping with the recommendations of the Madden report or the wishes of the families affected by organ retention, and her proposals are in fact diametrically different from the Senator’s in this regard. The Minister proposes that consent or authorisation will be the defining principle underpinning any of the specified activities involving human tissue, those [128]being post mortem examination, anatomical examination, public display, transplantation, research, or the import or export of human tissue from deceased donors.

An important aspect of the Minister’s human tissue Bill is the inclusion of provisions for consent to retention of human tissue once the coroner has concluded his or her investigations. These provisions will complement the Coroners Act 1962 and the provisions in the Coroners Bill 2007 which awaits Committee Stage in the Seanad.

The Bill sponsored by the Senator contains many useful elements and certainly is heading in the right direction. On the issue of consent for post mortem examination and organ retention, the Senator, in his desire to bring forward proposals to support transplantation, may not have taken into account the effects his proposals for an opt-out consent model would have on post mortem examination and related activities. I am sure the Senator and I would not find it too difficult to reach agreement on this issue. I would go as far as to say I could not see Senator Quinn and the Minister having any difficulty in sorting out this aspect of the legislation. With regard to organ donation, the principal area in which the Minister’s proposals may — I emphasise the word “may”— differ from Senator Quinn’s is the eventual choice of model of consent. As I have explained, the Minister is not against the presumed consent model advocated by Senator Quinn, but feels there must be public debate before such a fundamental change is made to current practice. The case for the operational benefits of the model needs to be proven and the input of the Attorney General is required.

One area in which the Minister’s proposals go further than those of Senator Quinn is that of regulation. The Senator’s Bill does not propose any formal regulation of the activities I have outlined, while the Minister sees this as an important element of the legislation. The Minister has given the matter some consideration and has reached the conclusion that the publication of national guidelines and codes of practice on post mortem procedures, while they will have a place in the new structures, are not sufficient on their own to ensure compliance and gain public confidence. Self-regulation would not be acceptable in the aftermath of the post mortem inquiry and in view of international evidence of similar practices in many other jurisdictions.

Primary legislation is the only route for introducing the necessary safeguards, and the introduction of regulation, together with penalties for wilful breach of that regulation, is a proportionate response to the difficulties that have arisen. The Minister’s aim is to develop regulatory structures that will be sufficient to address identified need without being overly restrictive or prescriptive with regard to clinical practice. She is supported in this by the recommendations of the Madden report on post mortem procedure and practice and the outcome of the preliminary public consultation conducted by the Department. I hope these measures, which are designed to support and protect tissue donors, bereaved families and health care professionals, will meet with the Senator’s support.

I thank Senator Quinn and his colleagues for affording me the opportunity to speak in the House this evening and for opening this most important debate. I look forward to Senators’ support for the Minister’s proposals on human tissue matters in the coming months. The Minister supports the outline of the Senator’s suggestions and I hope agreement will be reached in the near future on this important Bill.

Senator David Norris: Information on David P.B. Norris Zoom on David P.B. Norris I welcome the Minister of State, Deputy Moloney, to the House and I welcome his useful review of the situation. I also very emphatically welcome the clear indication he gave of Government support for the general principles behind Senator Quinn’s Bill. I compliment Senator Quinn on his initiative in producing this legislation. It is no easy matter to produce a Bill. This is a very important area and one in which the advised view of the Seanad can be useful. It is also an area of some little delicacy in certain aspects.

  [129]5 o’clock

My brain is somewhere over the Mediterranean because I have just come back from Cyprus by a very circuitous route. I put that on the record partly because I am rambling but also because in reviewing the literature I could not help but notice that, appropriately enough, it was a Cypriot European health Commissioner, Markos Kyprianou, who launched a significant report in this area in 2007. Even a small and fairly remote country such as Cyprus, which is still very much an agricultural community, has, through the human experience of its people, witnessed the need for action in this area. One of the things that moved me about what Senator Quinn said — I did not actually hear it, but I read his script, which he kindly supplied me with about half an hour ago — was the story of Mr. David Ryan. No one could fail to be moved by the way in which Senator Quinn put a human face on this matter. Few of us who have not been placed in this situation could possibly comprehend the agony of being on a waiting list and waiting for a tragedy to occur to another family in order that that person might continue his or her life. I do not frequently concur with the views expressed by His Holiness Pope Benedict XVI, but I am glad to say — I am sure it will go to Senator Quinn’s heart — on this occasion I can. Recently the Pope indicated that he had a donor card. He regards it “an act of human love” to give life to somebody after one’s own death. It need not necessarily even be life. It could be the gift of proper eyesight, proper functioning in other areas or improved functioning.

Among the areas the Minister of State reviewed was the question of opt-in, opt-out and the third option which is mandated choice. This is one favoured by the British Royal College of Physicians. Under that option legislation would be passed that decisions would be required by law to indicate before death a person’s position. That affects an entire range of areas. In this country where we do not have a mandated choice or an opt-out situation, a person could be killed tragically and that person may have wanted his or her organs to be donated, but the views of the family take precedence. I am not sure that is wise. While the sensitivity of the grieving family must be considered, I am certain that in a case where a person has clearly indicated he or she wants his or her organs to be used then that should have legal precedence. I welcome that the Minister of State has indicated this is what the Government would envisage subsequent to the passage of legislation.

We must also take into account the Madden report. I must say some of the communications I have received from Parents for Justice seem to have a slightly shrill tone, including suggesting that Senator Quinn should go back to the dictionary for a definition of the word, which is a kind of debating point. I am not sure it does its case any good by making this kind of point, although, of course, I have not had, nor am I likely to have, the experience of being a parent or a bereaved parent. I can understand that feelings may very well be exacerbated in such a situation. However, I have known a number of people who have had transplants. It came as an enormous surprise to me that the late dean of Christ Church was one. In speaking to him on one occasion I was quite unaware that he had received a heart transplant. For someone of my generation it is astonishing that medical science has progressed to this extent.

I note in his contribution, which I heard, Senator O’Toole used the word “harvesting” of organs. The Senator used the term in the neutral sense. However, in the wider global political spectrum the Senator would be the very person who would be concerned about the word “harvesting” because he and I were among those who raised the question of the Chinese Government detaining Falun Gong prisoners and using them as live organ banks so that they could be killed to order and their organs harvested. It is reasonable to include in this important debate from a humanitarian point of view our continued revulsion of using human beings as a kind of organ bank.

[130]In the neighbouring island of Britain there was a campaign sponsored by The Observer newspaper — I am not sure if other colleagues have referred to it. It is interesting that the overwhelming number of Members of Parliament surveyed were in favour of precisely the type of legislation Senator Quinn has urged upon the House this evening. They were supported by a very significant range of professional bodies. The British Medical Association, the Royal College of Surgeons and the Royal College of Pathologists all came out in favour of the opt-out approach. That is very important because, as may well have been said, we must face the fact that ten people every day in the European Union die for lack of organ transplant availability.

In his speech the Minister of State referred to Spain. I wish he had been more specific. He simply said something to the effect that although Spain has a very high proportion of organ donors, the originator of the opt-out scheme was not convinced that it was responsible. I would like to know more about that. I would like to know precisely what he said and precisely what factors the Minister of State believes were important. Were they education, a television and media campaign or something else? The figures are rather stark. Spain is the highest with 34.6 donations per 1 million people and the lowest is Romania with 0.5 donations per 1 million. The Minister of State did not tell us where in this spectrum Ireland fits. It would be very useful for us to know.

We know there are a considerable number of these operations. In case nobody else has put them on the record I would like to do so. Since 1985 there have been 261 heart transplants up to March 2008. While that is by far the largest transplant number, I would have thought it is still comparatively small. Since 2005 there have been ten single-lung transplants and six double-lung transplants. Here again we come to the heart of the human matter. One of the most insidious diseases is cystic fibrosis. The only real relief that can be gained by a patient from this terrible disease is by a lung transplant. That there have been only ten single-lung transplants and six double-lung transplants since 2005 indicates a need for a great development here. Some 32 people are on transplant waiting lists for lungs. I again return to the appalling situation of people left waiting and not knowing whether they will have the possibility of life.

We must consider the matter in an overall European context. The Eurobarometer survey has indicated that 56% of European people are prepared to donate one of their organs to an organ donation service immediately after their deaths and probably would support this kind of legislation. We must have an informed debate and I congratulate Senator Quinn. There are risks, for example if proper procedures are not followed, of receiving into the body not just the health-giving organ, but also malignant organisms such as HIV infection, hepatitis C etc. There needs to be full and proper quality control and infection risk monitoring. Various types of bacteria, fungi, parasites and cancers can be transmitted. We have already referred to organ shortages and there is the question of organ trafficking, which apparently exists in Europe at a very low level and underneath the general radar.

We need to consider the legislation very carefully. I commend Senator Quinn on producing it. It would be useful to place it in a European context and review the debate that took place next door in the United Kingdom.

Acting Chairman (Senator Michael McCarthy): Information on Michael McCarthy Zoom on Michael McCarthy The Senator’s time has concluded.

Senator David Norris: Information on David P.B. Norris Zoom on David P.B. Norris I will come to the end of my sentence with the Acting Chairman’s permission.

Acting Chairman: Information on Michael McCarthy Zoom on Michael McCarthy In fact the Senator has gone over time. I have been extra lenient.

[131]Senator David Norris: Information on David P.B. Norris Zoom on David P.B. Norris Not at all. We need to consider the matter in a European-wide context with a view to introducing an EU-wide donor card regime. I compliment Senator Quinn on his imaginative and very useful proposals here this evening.

Senator Lisa McDonald: Information on Lisa McDonald Zoom on Lisa McDonald I welcome the broad thrust of the Bill and fully acknowledge and support the enthusiasm and concern of Senator Quinn in bringing the legislation before the House. As he said, it is about saving lives. That tenet needs to be fully appreciated and respected.

Consent for the donation of organs for transplantation is a central issue. The opt-in or opt-out, or presumed consent versus the mandated choice, which have all been outlined by previous speakers, are the models that require public consultation and broader debate. Given the editorial in The Irish Times today that debate has commenced and is welcome. In view of the organ retention scandal of recent times, this is timely legislation and I urge the Minister for Health and Children, Deputy Harney, to bring forward the human tissue Bill as soon as possible. The Bill is about saving lives and for those on the transplant lists for various organs, including cystic fibrosis sufferers, this cannot happen soon enough. There is a need to move forward with the legislation as soon as possible.

I do not doubt that the presumed consent, the opt-in model, has meant that donation rates have risen in the countries that have adopted it. That financial resources have been saved due to the higher rate of organ donation is a welcome side effect.

The issue of specified activities, which Senator O’Toole dealt with in detail, involving human tissue, the post mortem examination, the anatomical examination, the public display, transplantation research, and import and export of human tissue from deceased donors may need to be looked at in the legislation that comes before the Oireachtas in that it may need to be separated. There would be widespread support for presumed consent for transplantation but I am not sure if there would be the same level of support for research. Perhaps those issues could be divided when drafting the Bill. All the issues need to be dealt with and legislation is required. In that regard the Minister of State, Deputy Moloney, stated that the report of Dr. Deirdre Madden on post mortem practice and procedures has led to key recommendations for bringing forward legislation in this area. That is what the Minister is looking at. On the issue of hospital post mortems and their regulation versus the coroner’s post mortem, the latter is separate and is being dealt with in the Coroners Bill which is before the Houses of the Oireachtas.

Senator O’Toole made the point in regard to the consent of the relatives and bringing them in on the process that if they consider what is being done is the donation of an organ as a gift that could help the healing and the grieving process and although the death of the deceased was untimely he or she has given the gift of life to somebody else. That is something the lobby groups should take into consideration.

We are concerned here with a huge cultural change but it is a step we need to take. When I was in university, during Fresher’s Week there were tables from which one picked up a donor card. I am a donor card carrier but if I was to meet an untimely death going home to Wexford tomorrow, the card is probably in another purse or somewhere in my papers.

As a practising solicitor for the past ten years I have noticed that increasing numbers of people want to write their will, despite the fact that until recently, rural people found it taboo to speak about death. People in towns and cities have a greater ability to deal with these issues. As a country we have been holding back on this issue and this has led to a series of intestasies.

Recently I have noticed that some people say they want to be cremated after death. It is their wish, not their relatives’ wish. The first point I make to such a person is to tell his or her next of kin and relatives because the practising solicitor may not hear of the person’s death [132]until a week later when it would be too late. Cremation is something we are not used to in Ireland and for relatives it is a new departure. However, it is on the increase.

In writing their post death testamentary dispositions, that is, their wills, people are also saying they wish their organs to be donated. Again, that is too late. Legislation is needed to deal with this issue post haste after a crucial accident has taken the life of a loved one. We need to bring society along with us and in that regard the Minister is prudent in offering this aspect to the wider public for consultation. However, I fully acknowledge the thrust and tenet of Senator Quinn’s Bill and the work he has put into it. I agree with Senator Feeney’s request for the broad base of the Bill to be taken into consideration by the Minister when the legislation comes before the House. The last paragraph of The Irish Times editorial today reads:

A major 2006 international study found that, when other factors are eliminated, presumed consent can give rise to a 25 to 30% increase in organ supply. For those desperately waiting for their chance this would represent real hope.

Senator Michael McCarthy: Information on Michael McCarthy Zoom on Michael McCarthy I welcome the opportunity to contribute to this debate. I am one of those people who has always viewed organ donation as selfless and something we all aspire to doing, to ensure when we are gone we can benefit somebody else and give them the gift of live. Unfortunately, I do not have a donor card. When I see the advertisement it goes to the back of my mind because we all think we will live forever. As Senator McDonald has said, there is a certain finality about making those decisions and entering into that thought process where one has decided what to do.

It is good that we are debating this issue in the House. I commend Senator Quinn on bringing the Bill before the House because, while making us think about organ donation and transplantation, it puts this issue in the spotlight. By debating it here we will raise public awareness not only in the Houses of the Oireachtas but among charities, health professionals and the media in general. That is worthwhile in itself.

While researching for the debate this afternoon, I noticed that 69% of people are willing to donate organs, yet only 29% carry donor cards. That statistic speaks volumes about the whole area of transplantation and the lack of cognisance given to it.

I accept that the Bill aims to put a legislative framework in place. Having spent the last hour in the Chair I have noticed there is a broad school of opinion in the House that accepts the tenet of the Bill and agrees with its broad thrust. I hope that whatever decision is reached this evening will lead to a legislative framework to allow the aspirations contained in Senator Quinn’s Bill to become law. I know the issue is very difficult for people but it is a practical one. The manner in which we try to switch from the current situation to permit that opt-out will speak volumes. I am one of those people who has often thought about the matter but has never got around to doing anything about it. We must be aware of the many situations where people have benefited from organ transplantation and must develop a legislative framework for it.

The opt-out, or presumed consent model of organ donation, already exists successfully in Austria, Spain and France. In those countries if a person dies who is a suitable donor, his or her organs can be transplanted to save another person’s life. We must remind ourselves why we are debating this Bill. Its objective is to save lives. I agree to a system whereby people can opt out or register as a non-donor and am open to suggestions that this might be managed by Internet, by the carrying of a non-donor card or by stamping the back of a licence.

While researching this afternoon I came across a worthwhile quotation, one that we should all remember. James Nolan, an Irish kidney transplant recipient said: “Please don’t bring your [133]organs to heaven because heaven knows we need them here on earth”. That was said by a person who has already benefitted from organ transplantation.

There is a broad thrust of support for what Senator Quinn has tried to do. He has certainly put the issue into the spotlight and it has been followed up by various organs in the media, no pun intended. The editorial in The Irish Times today touched on the matter. As legislators, we have all been made to think about the subject. I urge the Minister of State to carry back to the Minister for Health and Children, Deputy Mary Harney, the news that this proposal has been broadly welcomed in this House, although we might not agree on the finer details. There is an onus upon us, as legislators, to ensure we put a framework in place to allow this Bill to be enacted.

Senator Déirdre de Búrca: Information on Déirdre de Búrca Zoom on Déirdre de Búrca I congratulate Senator Quinn on his Human Body Organs and Human Tissue Bill 2008. He has taken the opportunity in Private Members’ business to advance draft legislation in this House to prompt the Government to accelerate the preparation and enactment of legislation in this area. Judging from other speakers in the House today there is a widespread consensus that such legislation is badly needed. It is to be hoped that the effect of the introduction of Senator Quinn’s draft legislation will be to ensure the Government introduces as quickly as possible the necessary legislation in this area.

I congratulate the Senator again because this is bold legislation. It proposes a fundamental change to a system with a presumption in favour of consent to the donation of organs and body parts unless that consent is expressly withheld.

I agree with the sentiments expressed earlier by the Minister of State. Based on practice in Spain and elsewhere, it appears that presumption in favour of consent can and does lead to a much greater level of availability of organs for transplantation. Such a fundamental change would require full consultation with the public and for that reason I withhold my immediate support for the proposition. I support what the Minister of State said about public consultation and having a level of support for that fundamental change. It is a very sensitive area and speakers have highlighted this point earlier. I do not believe it would be fair to introduce legislation containing such a fundamental change without the support of the public. Following a public consultation period, I would be happy, and I believe the Green Party would be happy, to consider legislative change to presumption in favour of consent.

The issue of consent is obviously central to this legislation. In this context consent refers in particular to the removal, retention and disposal of human body organs and human tissue. There have been scandals in this country, specifically the organ retention debacle in which hospitals retained organs of deceased children following post mortems and without the consent of their immediate families. The group, Parents for Justice, has done great work in raising awareness of this issue. The Government set up a non-statutory inquiry, the Dunne inquiry, which was followed by the Madden report in 2006 that outlined a series of recommendations.

Reasons for the removal, retention and disposal of organs and human tissue can vary, ranging from diagnostic purposes, teaching and research and transplantation. What is very helpful in Senator Quinn’s draft legislation is the clarification dealing with consent being for “permitted” activities for scheduled purposes. Those kinds of safeguards would be necessary in any legislation because harvesting human organs and tissue is a sensitive issue. Harvesting happens at a time when, typically, people have been recently bereaved and are obviously very emotional and distressed. The circumstances of the death of the deceased person may have been very tragic. It is a difficult time to try to establish consent for a procedure as sensitive as this one and we must have adequate safeguards in place. There is growing public concern about possible trafficking in human body parts and any legislation we may introduce in this area must put safeguards in place to ensure this cannot occur. That would be the greatest fear of many [134]relatives of deceased adults and children. It is possible to imagine a system emerging in which human body parts might be trafficked and we must be very careful that the legislation allows no scope for this to happen.

This Bill touches on a number of important issues, one being the consent of children. It was important to address this issue but I am not sure the Bill has fully resolved some of the dilemmas that would arise in obtaining the consent of children to the harvesting or use of their organs after their death. A young teenager is in a much better position to give informed consent to procedures such as this while a very young child is not. Perhaps some kind of differentiation between categories of children, based on age, might be useful. I would be more comfortable with that.

A helpful part of the Bill concerns qualifying relationships in the context of withholding consent by children and adults. The Bill raises the need for a much greater level of public awareness and education in the area of organ removal and retention. The public must understand to what uses organs are put and there must be much clearer explanation as to the kind of medical research carried out and what some of its possible benefits might be.

We need improved medical education and training in hospitals with a much greater emphasis on communications skills and on the legal and technical issues. Training must be given to personnel in the area of post mortems. One of the reasons the system in Spain is so successful is that there are adequate support services in hospitals for families who find themselves in a position where their consent might be required. We must ensure that if we are to introduce legislation in this area, resources are made available to ensure that proper supports are available.

The issue of disposal of retained organs is very important. The period of retention can often be quite long and we should have very clear protocols around this. The principle of observing the wishes of the family concerning the disposal of organs, and how they should be disposed of, should be established very clearly in any new legislation. There have been difficulties in the past where families have discovered that their children’s organs may have been incinerated in the same way that general hospital waste is incinerated. Very often the wishes of families are that these organs would be re-buried with the child’s body. While it would be important to establish this principle in any legislation, I wish to conclude by again congratulating Senator Quinn on a timely and welcome item of legislation and by expressing the hope that the Government will follow up with its own legislation as quickly as possible, based on a full public consultation process.

Senator Rónán Mullen: Information on Ronan Mullen Zoom on Ronan Mullen I welcome the Minister of State to the House and commend Senator Quinn on bringing forward for debate this timely and worthwhile issue in the form of his Bill. As other speakers have noted, this is a deeply sensitive and important issue. It was great to hear the different speakers speak from their own experiences and with reference to stories concerning their families, friends and loved ones. This issue touches most people in our society because one either has been personally affected by it or knows someone who has had the benefit of an organ transplant or has a loved one who was a donor. I also wish to thank Senator Quinn for having organised an excellent briefing session on the issue yesterday. Sadly, people are extremely busy at present as a great deal is happening and it was a pity that more people did not attend it because it was a fine briefing session. It was highly informative regarding the intent behind the Bill and in taking Members through its specifics.

I come to this debate as one who perceives it as an important starting point. I echo fully Senator de Búrca’s comments on the need for public consultation before arriving at definitive legislation on this subject. Whereas I may have some concerns about some aspects of the Bill, [135]which I intend to outline to the House, I do not do so in an adversarial sense, but rather in the spirit of promoting a full debate on the complex and sensitive issues this change of policy would imply. While a number of issues are of particular concern, I hope the relevant Department will consider today’s debate and take it forward, as Senator de Búrca has proposed, to a wider consultation that will lead to legislation in this important area.

I will make a number of points. The essential proposal in Senator Quinn’s Bill is that we would change from an opt-out principle to one of opting-in, which in general would be highly desirable. The idea that one would presume that someone would consent to have his or her organs used, transplanted and given to another person to save another life in the event of his or her death, strikes me as one which extols the human virtue of solidarity with other people. It is right and proper that as a society, we would presume a generous intent on the part of people when such tragic circumstances arise as to give rise to the possibility of the donation of an organ.

However, Members must think carefully about what the Constitution requires and perhaps what natural justice requires in respect of what should happen when the potential donor is a child and what should happen when a child has not indicated consent one way or another. At the briefing yesterday, I was given to understand that Senator Quinn would propose that when a child had not given a view on whether there should be a donation in the event of his or her death and when parents had not recorded an opt-out and when a parent or next of kin was not present in the event of a tragic accident or so on, it might then be possible for professionals to proceed in an orderly and regulated way to facilitate the transplant. Were that the case, I would be concerned. This must be discussed in greater detail to decide who precisely should be consulted and perhaps whether the presumption should be of an opt-out, rather than an opt-in, unless parents are present to give permission for it in such an event. However, I recognise there are different sides to that argument.

A question that I find fascinating and which I believe will be highly important is that of when death occurs. While I am aware this matter is not dealt with in the Bill, it is a central question, the resolution of which hangs over the entire debate. An interesting debate is taking place on the question of what constitutes death and whether what has been termed brain death actually constitutes death. This undoubtedly is connected with the fact that many cases have occurred in which people who were in what might be called a vegetative state, a semi-comatose or a fully comatose state, even for long periods of time, have made a recovery.

There have been some recent publications in this regard and I wish to draw Members’ attention to one in particular. I refer to an Italian work, Finis Vitae: Is Brain Death Still Life?, which was published in English by the Council for Research in 2006. The Council for Research is not an ecclesiastical body although it certainly receives contributions from Catholic church sources in Italy. It is interesting to note that the definition of brain death which has been embraced in medicine over the last 40 years has been accepted by the church. Its viewpoint in this area should coincide with those who come from a more secular perspective because there no great dogmatic principle is in dispute and the idea that life is sacred and that one should not take innocent life is a principle with which most civilised people will agree.

What is interesting is that people are beginning to question whether what has been called brain death is or can constitute death. Professor Roberto de Mattei, who contributed to the aforementioned book, discussed the provenance of the notion of brain death. In 1967, after the first heart transplant was successfully performed in South Africa, questions were raised about how to ethically acquire organs for transplant, given the short window of time in which they must be transplanted. The problem arose that if a person was near death but not yet dead and if such a person was killed for his or her organs, this obviously would constitute the killing of [136]an innocent person. There were two options, that is, to change the moral law making it licit to kill the innocent or to change the criteria for ascertaining death. This is what led to the choosing of what might be called by some a utilitarian justification. Since lives would be saved, the social construction of brain death was created and developed to meet the need of transplanters during the procedures’ developmental stages.

The first article on brain death appeared in 1968 in the Journal of the American Medical Association and was entitled “A definition of irreversible coma”. Dr. Paul Byrne of St. Vincent’s Medical Center, Ohio, is a neonatologist and was another contributor to Finis Vitae: Is Brain Death Still Life?. He was invited by the Pontifical Academy of Sciences in February 2005 to speak on the issue and stated that brain death is not true death but a fiction concocted essentially to facilitate transplantation. These points represent some of the emerging debate. A recent publication in the New England Journal of Medicine makes the same point, albeit from the perspective of people who support transplantation. They state it is not sensible to locate the ethical basis for transplantation on the idea that brain death constitutes death, because they are of the view it does not. Where does that leave one?

I only make this point as someone whose heart is with the concept of presumed consent. Those who disagree with me might suggest taking my heart and leaving the rest. However, from that perspective, I suggest that were there a possibility that what is called brain death might not be death and were there a possibility of recovery, it might have implications for the concept of presumed consent. Were that to be the case, it might be better not to presume consent and to rely on the principle that greater love than this——

An Cathaoirleach: Information on Pat Moylan Zoom on Pat Moylan The Senator’s time has expired.

Senator Rónán Mullen: Information on Ronan Mullen Zoom on Ronan Mullen I will conclude.

An Cathaoirleach: Information on Pat Moylan Zoom on Pat Moylan I must call the next speaker.

Senator Rónán Mullen: Information on Ronan Mullen Zoom on Ronan Mullen ——no man hath or no person has. In other words, in the event that brain death is arrived at, a person could opt to allow his or her organs to be used, even if there was a slight possibility that he or she might survive. I only offer this points by way of a contribution to the debate. I thank the Cathaoirleach for putting up with me and I again commend Senator Quinn on bringing forward this highly important issue——

An Cathaoirleach: Information on Pat Moylan Zoom on Pat Moylan My hands are tied in respect of the time.

Senator Rónán Mullen: Information on Ronan Mullen Zoom on Ronan Mullen ——and look forward to an extensive consultation process.

Senator Mark Daly: Information on Mark Daly Zoom on Mark Daly I welcome the chance to speak in this worthy debate because a time when we stand in this House with the opportunity to help create legislation that can actually save lives is all too rare. I thank Senator Quinn for his contribution in highlighting the issue and I have no doubt his actions in raising this matter will form part of the Government Bill being proposed.

I am certain of one thing in tonight’s discussion, that the debate on the issue of organ donation is absolutely necessary. Beyond that point I am here to listen and learn from the opinions and research of my esteemed colleagues and offer my own views on the issue. I know the number of organ donations in the country must definitely increase and would like to consider the various ways this can be achieved.

One of the criticisms of presumed consent is the impression it is part of a nanny state operation in that it takes the right of the person to consider and is involved in the decision to [137]bestow the gift of life to another person. To assume one would do this belittles the act and takes for granted what a miracle organ donation is. If the harvesting of organs becomes as routine as any other procedure, grieving relatives can feel their loved ones, even before their passing, are viewed as vessels carrying organs to be removed and can find this grotesque and difficult to allow in this stage of grief. Studies have found that families are more likely to rebel if their role in the decision making process is removed.

It may be far more effective to encourage the discussion of organ donation with families and loved ones to normalise the process for everyone involved. Public awareness campaigns and facilitation of discussion in schools, colleges and work places could have the same effect as introducing presumed consent.

A survey by Spanish researchers found that of 200 families that declined to have their relatives’ organs removed, 78% changed their mind after the process was explained in detail. Very few organ donation awareness campaigns have concentrated on encouraging an individual to communicate about organ donation with family members. As organ donation does not take place without the permission of a person’s next of kin, Government agencies and organ procurement organisations must target communication with family members as a primary objective of organ donation campaigns.

A 2002 US study noted that because the quality of discussions between the potential donor and his or her family will depend on how well the donor is able to address vital issues regarding donation, it is recommended that campaigns seeking to promote communication between family members about organ donation must simultaneously seek to increase knowledge, debunk myths, and bolster positive attitudes about donation.

The United Network for Organ Sharing’s ethics committee has written that: “Intrinsic to the present approach to organ donation is the autonomy of each person to decide.” Autonomy, a paramount value underlying much of ethics and political philosophy, means that each individual has a right to choose and has final say over his or her own body. In this light it is supposed that a perfect organ transplant system would satisfy three criteria: first, that every person would make a fully informed choice about whether to donate; second, that choice would be communicated to the surgical team; and, third, that the surgical team would act accordingly.

Clearly, under presumed consent the first principle of every person making a fully informed choice is compromised. Only those who go to the trouble of educating themselves and then either opting in or out of the system have made any decision. However, under the current system, often both the second and third criteria for the perfect organ transplant are removed. In Ireland today a person can expressly indicate by carrying a donor card or ticking his or her driving licence that he or she would like to donate organs in the event of demise but have this wish overturned by relatives who are not aware of the dying person’s convictions or are not educated on the process of organ donation. The tendency to follow this trend is so prevalent that one could die with an organ donor card in every pocket, and another one pasted on one’s forehead, and the family would still be able to overturn these wishes.

This challenge to organ donation occurs because a person’s decision to carry a donor card is not legally binding. It is only considered an indication of their intention. Consequently, a once competent person’s wishes, which are known either orally or in writing, can be overruled by the next of kin. If the organ donor card becomes a legally binding will, and this is accompanied by a massive public opinion campaign to sign one, I believe the situation would improve. I am not sure this is the route we should go down. This option is known as first person consent. Under this system additional witnesses or family consent is no longer required to carry out wishes in the event of death. In the event a person has not had the option to join the first person consent registry or is under the age of 18, next of kin will still be approached for consent.

[138]A properly signed declaration, such as the back of a driving licence or an organ donor card, is a legal document under the Uniform Anatomic Gift Act in the US and is effective to authorise donation in every part of that country. Moreover, the relevant laws specify that consent of the donor’s relatives is not needed in such circumstances. The relatives do not have legal authority to undo the donor’s wishes.

Whereas the family’s permission may no longer be required under first person consent, effective systems will still include relatives in the process by explaining the donation process to the donor’s family, answering questions and providing additional support. The family will be asked for the donor’s medical and social history to help determine which organs or tissues may be transplanted. Family members are also asked whether they wish to receive follow-up information, such as general information about organ or tissue transplant recipients.

I commend Senator Mullen on offering his heart to us and much of what we have discussed has already been covered. Spain has been mentioned time and again but it is not the presumed consent model that works there. That country has an effective system with transplant specialists and counsellors who can speak to families and educate them in their supreme hour of grief.

I ask that we begin by having people signing the back of their driving licence and having the information pooled in Clare. We have 1,550 people on dialysis in this country, which costs a staggering €100,000 per annum per person. If we spent that money on an effective organ donation system, it would be money well spent. Lives would be more fulfilled and other lives would be saved.

In my own county, it is somewhat encouraging to note there were nine times more organ donations in Kerry General Hospital than in a major hospital in Cork, and 18 people’s lives were transformed forever by the actions of the Kerry hospital. It is the staff in the hospital who took the initiative, went to the families and looked for organs from the grieving families. In the Cork case, only two kidneys have been donated from that hospital in ten years.

Ultimately, we are failing because as legislators we have not put a system in place. To say we are tied at the bottom with Malta is not a record we should have this time next year.

We will not vote on this Bill but as I indicated to Senator Quinn a Bill is coming. His input from the outline of this Bill has started a debate that will end in lives being saved. Even if what he started today saves one life, I remind him that the Bible states that if a man saves one life, he saves the world entire. I thank Senator Quinn.

Senator Feargal Quinn: Information on Fergal Quinn Zoom on Fergal Quinn I welcome the Minister of State, Deputy Wallace. I found this debate very useful and Senator Daly’s last words were very close to what I would have said myself.

The aim in introducing this Bill on behalf of the Independent Senators was to achieve shorter waiting lists and fewer deaths. I believe the Minister of State’s comments that this Bill contains many useful elements and is heading in the right direction. If that is to be the start, so be it. I really appreciate the amount of effort put in by so many people today. I had taken notes and was going to comment on each of them but I will not attempt to do so.

I am heartened by the overall experience because the Minister of State spoke of coming together to further discuss and have public consultation. Those were the words of the Minister for Health and Children, Deputy Harney, as well. I believe that is what the objective is — to further this on that basis.

I appreciate all the effort that has been put in. I have learned two things from this process. One is that Pope Benedict XVI carries a donor card, which I did not know. Mr. Mark Murphy, who is in the Visitors Gallery, has responsibility for this area. I do not know if he gave the [139]donor card to the Pope but I am delighted to know he has it. I learned the other fact yesterday, and it is that one of the reasons the United States has more donations than Canada is because of the number of gunshot deaths that occur there. It is a reminder of the things we learn when we introduce legislation.

I am happy to adjourn this debate because of what the Minister of State said. I believe the Minister will achieve what she and I are both setting out to do.

Debate adjourned.

Sitting suspended at 5.55 p.m. and resumed at 6 p.m.

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