Human Tissue (Organ Donation) Amendment Bill

Dr JACKIE BLUE (National) Link to this

I move, That the Human Tissue (Organ Donation) Amendment Bill be now read a second time. This bill started for me 2 years ago. As a new MP I was approached by a constituent, Andy Tookey, who then lived in Auckland. He had been very keen to get, and lobby for, an organ donor register, and together we devised and put together this bill. It was drawn up, put in the ballot, and actually drawn out very, very quickly, in only a matter of weeks. So I am very grateful to Andy for coming to me to talk about the issue of organ donation, because it really raised an issue I had been unaware of until that time.

Andy has a daughter who may yet need an organ donation at some time in the future. He raised the matter that there really was an issue of not enough organs being available for donation, and there was a huge need out there. As I said, I was grateful to Andy. We put the bill into the ballot. It got drawn out, it wended its way through the first reading, and it was supported all the way through to the Health Committee. Sadly, it will not be supported after its second reading. None the less, Andy is a great campaigner. He is not going to give up; neither am I.

There is provision in the Government’s Human Tissue Bill such that if a future Government feels there is a need for an donor organ register, then a register can be established without the need for regulation. So the door is open and the cause is not completely lost. There is still hope. But from now on, the focus will be on how Organ Donation New Zealand, which is the organisation that is being funded to retrieve organs for donation, will step up to the mark, because in the last few years organ donation in New Zealand has been steadily dropping. For instance, from 2001 to 2004 the number of organ donations was between 38 and 40. It dropped to 29 in 2005, and in 2006 plummeted to 25 organs. So there has been a steady drop in the number of organs that have been available for donation.

There has been a greater need for organ donation as a result of the diabetes and obesity problem we have in New Zealand. Of course, the consequence of long-term chronic diabetes is end-stage renal failure. People with that problem are hooked up to a machine and receive quite expensive dialysis treatment. Their quality of life is poor and the only way they can get off the machine is through means of an organ donation. Also, we have an estimated 200,000 people who suffer from either hepatitis B or C. The complication of that disease can be end-stage liver failure, and there is no way out of that problem. There is no dialysis treatment for liver failure; those people need an organ donation. So there is a greater need for organs but there are fewer organs being offered for donation. Also, over the last few years, since 2005—and I have looked at the statistics—the number of organ transplants has been dropping steadily. They may have increased in the last year; I do not have those figures to hand.

Organ donations are not just for those illnesses. Originally we were just doing organ transplants for kidneys and livers, but now we are doing them maybe for spleens, hearts, and lungs. A lot more illnesses have the option of organ transplant. Also, the threshold to receive an organ donation has actually been lowered. Patients who are a lot sicker are now being accepted as eligible for organ donations. So there is a lot of need out there and, currently, it is not being met. That was the whole point of the register. It was to provide a mechanism for New Zealanders to indicate their wish to donate an organ after they die. Currently, we just have an indication on a driver’s licence, which is a “tick a box” system. It is not the informed consent that is universally accepted. There is no dispute over that, and it is not acknowledged even in the intensive care situation.

Concurrently, we have fewer brain-dead patients in intensive care. That is due perhaps to fewer road deaths, obviously because of the promotion of drink-driving campaigns and road safety generally. Also techniques have been developed in intensive care units where doctors do more aggressive procedures on those people who have been brought in with brain injuries, such as craniectomy, where they reduce the pressure on the brain. This means there are fewer people who can be termed brain-dead, and therefore obviously they are not available for organ donation.

New Zealand per capita has few intensive care unit beds compared with other countries in the world. It is also a factor that the fewer intensive care unit beds there are, the fewer the patients who conceivably could be on machines. Their brains could be kept alive, and their organs could be kept alive for possible donation. New Zealand, at the last count, had 69 intensive care unit beds per million people, compared with France with 384, USA with 305, and Spain with 148. So we are well down in the number of intensive care beds that we have per capita, and that could be a factor.

So there are a lot of reasons why we need an organ donor register. There have been two previous reports from the Health Committee on this issue. These were done in 2002 and 2003, and both called for the establishment of an organ donor register. Even the Labour Party as part of its 2005 election manifesto said it would establish an organ donor register. One would have thought there was hope that this bill would pass.

LESLEY SOPER (Labour) Link to this

As the deputy chair of the Health Committee, I rise to speak on the Human Tissue (Organ Donation) Amendment Bill with some feeling. This bill was referred to the select committee with wide support from most parties, with acknowledgment given to Mr Andy Tookey and Jackie Blue for doing the work on the bill, but with some reservations around its intent and likely effectiveness. It was referred to the select committee with Labour’s support, because there was definite acknowledgment that New Zealand’s organ transplant rate was one of the lowest in the world and that we needed to do anything that could reasonably be done to improve that rate, in order that the detail around organ donation, particularly the international evidence on the establishment and effectiveness of organ donation registers, could be examined.

The bill was also referred to the select committee to give the public a chance to comment on a very emotive topic, and it has certainly stimulated and increased discussion about organ donation. At the time the bill was referred, it was signalled that the Labour Government had a broader and more comprehensive bill in preparation, to replace the Human Tissue Act 1964. That bill, the Human Tissue Bill, which deals broadly with the collection and use of tissue from dead human bodies, was introduced in 2006 and referred to the Health Committee, and much of the evidence on the two bills has been heard together.

The Health Committee has heard much heartfelt and very emotional debate on organ donation. We have heard the views of members of the public who have experienced the death of loved ones. We have heard the views of intensivists, who actually make the decisions in our intensive care units. We have heard the views of those who want organ donation with no family veto, and the views of many, including tangata whenua, who want whānau to have the ability to make an overriding objection. We have heard about the general lack of awareness of organ donation realities in New Zealand, and all of us on the select committee would probably say that we are now much more educated than we were on just how many organs are actually available for donation in any given year in New Zealand.

We have heard of the inadequacy of the current driver’s licence register, and we have heard family members say that they wished they had known what their loved ones had actually wanted done with their organs, and that they would definitely have that discussion with their families in the future. I do not think it would be too much to say that no members of the Health Committee are now in any doubt themselves about discussing this issue with family members if they have not already done so, and about discussing the need for further education and promotion of organ donation. However, we have also heard clear evidence that there is as yet no compelling evidence that an organ and tissue donor register increases the overall rate of organ and tissue donation, and that was found after a wide canvassing of the international experience.

The Health Committee has elected to recommend that this bill not be passed, as the compelling evidence for a legally binding register is not available at this time. However, the select committee has recommended the inclusion of a clause in the Government’s Human Tissue Bill to permit the establishment of an opt-on organ and tissue donor register, should the evidence make that a desirable course in the future. Evidence did point to increased public awareness about organ and tissue donation, improvements in processes around donation, and improvements in coordination between agencies as being most likely to lead to improvements in donation rates. Organ Donation New Zealand, which was set up last year, has initiatives under way in this area, and welfare assistance for living donors is already available.

I also need to point out that the Government’s Human Tissue Bill aims clearly for a balance between respect for the wishes of the deceased person and the cultural and spiritual needs of the family. It endeavours to treat all with dignity and respect. Jackie Blue’s organ donation bill does not acknowledge the needs of the deceased individual’s family. The Government bill also regulates trading in tissue, export and import of tissue, and use of tissue for non-therapeutic purposes. It establishes a crucial new consent framework for the donation of human tissue, and in all respects it is broader in scope than the Human Tissue (Organ Donation) Amendment Bill we are currently discussing.

I am very comfortable to commend the Government bill and to oppose the passage of the now unnecessary Human Tissue (Organ Donation) Amendment Bill. In conclusion, I need to point out that the National Party has not opposed the decision of the select committee that the Human Tissue (Organ Donation) Amendment Bill not be passed. It did not put in a minority report opposing that decision. Thank you.

JO GOODHEW (National—Aoraki) Link to this

I rise to speak to this Human Tissue (Organ Donation) Amendment Bill with some sadness in my heart. Although the previous speaker, Lesley Soper, is absolutely correct that the National Party has not opposed the recommendation of the Health Committee, its members, nevertheless, have seen the whole process that has been gone through when the two bills—the Human Tissue Bill and the Human Tissue (Organ Donation) Amendment Bill—were considered in the select committee at the same time. I cannot help but wonder what would have happened if Jackie Blue’s member’s bill had been the only one being considered—and I see some members opposite nodding—because there is a huge feeling amongst New Zealanders that somehow we need to do something to address the donor shortage.

We heard heartfelt stories. We heard a story from the parents of a young man who had drowned. His mother described him as a loving, giving young man, and she said that no one had asked them whether, maybe, he could have donated some of his organs. Although that was not uppermost in their minds at the time, she wishes now that he had had a chance to give, because she believes, knowing him as well as she did, that he would have liked to give. Thirty-eight people out of a possible 104 donors were donors in 1999-2000.

It is a sad tale, and during the course of the debate on these two bills it really hit home to me because a very close friend of my mother’s rang my mother to say that her niece had died in the South Island; she had died very suddenly of a brain haemorrhage. But her organs had been kept going on life support for some time, and that family was taking comfort in the fact that they knew her wishes and that she would be an organ donor. Just a day or two later a very close friend of mine who lives not far from my home rang to tell me that a close friend of hers was so excited because her husband was going to be travelling to Auckland to receive organs. I could not help but feel—and maybe I was right and maybe I was wrong—that maybe I was close enough to know that on this occasion one life have been saved, most certainly saved. In fact, my understanding is that many, many lives were saved because of that young woman being able to donate her organs. That was a great story, and it brought things home to me during this whole process.

I commend Jackie Blue for bringing this bill to the House, and I commend Andy Tookey for bringing the petition to Parliament. I know that their passion will not go away, and that they will be watching very closely to see whether we have any improvement, and whether education programmes or any actions on the part of New Zealanders can bring our organ donation rates higher. We know that in the Human Tissue Bill there is provision for a register, because there is still debate about whether a register can be useful.

We know now, in respect of drivers’ licences, that ticking the box about whether one wants to be a donor is a very interesting process. Most young people will get their licences when they are very young. I know that our teenaged daughters—our 17-year-olds and our 15-year-old—have all been through the initial test and have been asked to declare whether they want to have their organs used for donation. It is a very, very big question to ask a 15-year-old. I would have to say that most 15-year-olds do not really know what they are answering. It is not really surprising, given that they are still quite young and have not discussed their wishes with their families, that when the time comes that they are in a potential donor situation their family may not know what they want; they may not tick the box, because the thought is too horrible that they might die young.

The concept of having an organ donor register in the future is, perhaps, cold comfort, or maybe just slightly warm comfort—I am not sure. But the debate on this bill has been useful. It has raised the profile of the issue. Many New Zealanders have read articles in the paper. I know that some of the magazines have got on board more and have printed the stories of donors and also of recipients. That is pretty neat, because that is the sort of thing that gets people talking around their kitchen tables. That is the sort of thing that gets families discussing—“Well, it happened not too far from me. Should we talk about what we really want?”.

Again, I commend Jackie Blue for bringing this bill to the House and for generating such discussion around the breakfast tables of New Zealand. The health professionals who came to the Health Committee and submitted in the process of this bill had to search their souls too, because there was a question about who should decide whether one’s own wishes about one’s body should be paramount, and whether health professionals should be able to take the wishes of the family rather than the organ donor to heart. So they had to search their souls when they came to the select committee and told us where they thought their responsibilities lay in the event that they were part of the process of asking a family whether they would give permission, or of determining whether organ donation would take place.

In closing, I say that this has been a very useful debate, and I am sad that the bill will not go any further forward, though I am relieved that there is provision in the other bill for an organ donor register. I commend the Health Committee for discussing this bill fully.

Hon STEVE CHADWICK (Associate Minister of Health) Link to this

I too would like to congratulate Jackie Blue on this Human Tissue (Organ Donation) Amendment Bill. I am very aware of the amount of effort that goes into the drafting of a member’s bill and there has been quite a history behind organ donation legislation.

It is nice to see Sue Kedgley, the chairperson of the Health Committee, come into the House, because we were both on the Health Committee when Andy Tookey brought his petition to us. We made an incredible effort to listen to all submitters around his petition, because we too felt like members today who are wanting to increase the numbers of people who are prepared to give up their organs for organ donation—such a lofty cause. We wrote our recommendations to the report, and I decided that I knew what I was going to do for a member’s bill, too. So off I went. I got halfway through drafting the bill—so I really do appreciate the member’s efforts—and then I went off to Auckland City Hospital to meet the intensivists. That meeting was memorable to me and it is imprinted on my brain, because when I came out of that meeting I remember Sir Geoffrey Palmer saying: “Well, we’re not going on any further with this, are we?”, and I thought: “No, we’re not.”

There was a coalition of some courses going on at that time. The Ministry of Health was beginning to draft the Human Tissue Bill, which was introduced into Parliament in November 2006. I had been told that the issues I was using as levers in the drafting of my bill would be caught up in the Human Tissue Bill, so I was happy to drop it. As chance goes, in came Dr Blue with the same feeling that I had. I know that Andy gave up with me and he went to Dr Blue, and good on him—he is a lobbyist and he will never stop, as the member opposite said.

I think we need to have so much more discussion about human tissue and organs. As has happened with this bill, issues of great cultural sensitivity have been raised through the process of consultation on the Human Tissue Bill. That is something that I had overlooked in my bill, but I was very aware of the concerns of iwi and Māori about what happens to body parts, and about the spirituality of an individual person being put into somebody else. I worked in the clinical service at Rotorua Hospital, where I was the one who had to ask people whether they would consider a young person’s organs for organ donation. We had a great deal of difficulty with iwi unless I had beside me somebody who could change the language that I used to convince Māori that we really needed those organs. That was the way we worked together and we set up the Hunga Manaaki Service.

I believe that cultural sensitivity about human tissue and human organs is now caught in the Human Tissue Bill, but I think those issues were also overlooked in Dr Blue’s bill. I think Andy Tookey can say “Well done. You’ve raised the issue again.”, and that is what we asked for as part of the select committee’s recommendations. We said we wanted a media campaign; we wanted a publicity campaign to raise people’s awareness—it is called a social marketing campaign. We got one more step ahead then, because the Government, in response to the inquiry report, set up Organ Donation New Zealand, and that was fantastic. That is the next step forward.

I believe that with the voting down of this bill—and I know how disappointed the member is; we all win some and lose some in this place—the Human Tissue Bill has picked up an enabling mechanism for a register. I too believe that the evidence, over time, will come out that we need to link up the expressed wishes of individuals when they want to make it very clear on their driver’s licence what is meant around giving their organs as a donor, with the involvement of the family practitioner. The New Zealand Medical Association was very supportive of a member’s bill, and it had a very different view at that time from that of the intensivists. So there were divergent views even within the medical profession itself.

I believe that the work on this bill has given a profile to the issue. I have read the stories and they were very similar to what we heard on the Health Committee. We heard that we did not want to follow some of the international examples such as in Spain, where the system really is like the harvesting of organs. We do not find that to be culturally appropriate in New Zealand, at all. We also heard how we will raise the rate of organ donation in this country.

I am sorry to say that Jackie Blue’s bill will go down, but the Human Tissue Bill will go forward. So the member has contributed to the fabric of Parliament and also to New Zealanders’ belief and hope that we will have more people feeling absolutely comfortable about having those family conversations. My family know my expressed will when I die: if there is anything good left, they can take it and give it to somebody else. More people need to feel comfortable about having those discussions in their families.

That is what Jackie Blue’s bill has generated, and I congratulate her on this. We will wait for evidence as it mounts, and one day we might be saying “We said so.”, but at the moment the evidence is not there. I do believe that everything we do in health must be evidence-based, not emotionally driven. This bill is down, but the conversation will go on and the Human Tissue Act will be in place. I say “Well done.” I have enjoyed the tenor of debate in the House tonight.

BARBARA STEWART (NZ First) Link to this

On behalf of New Zealand First I rise to speak to the Human Tissue (Organ Donation) Amendment Bill. New Zealand First supports the recommendation of the Health Committee that this bill should not be passed.

This bill was considered very carefully by the select committee, and we congratulate the member on bringing it to the House. The Health Committee heard two petitions on this issue and they were both some time ago. In the last Parliament we were very interested to hear from Andy Tookey. This bill is basically a logical extension of his petition. It was a very unique opportunity to examine this issue again. We heard some very sad stories from many submitters for whom organ donation is the only option they have, from those who believe that there should be mandatory harvesting of organs, and from doctors who deal with this issue in accident and emergency every day. We have to thank these submitters for their time and for their courage in coming before the select committee to tell their stories and give us their views. It really gave us a total, fully rounded view of the situation.

We considered this bill in conjunction with the Government Human Tissue Bill. We have ensured that within that legislation there is the ability to set up an organ donor register should there be the evidence that is required to support such a register when, and if, it is required. We are very aware that donor shortage is a fact of life in New Zealand. It is a problem in New Zealand, and it is also a problem elsewhere in the world. We know that there are very few organs available and that a lot are needed. With the increasing diseases that we have, sometimes organ donation is essential for keeping people alive.

Back in 2004 when we examined the issue in the select committee I stated in a press release that a more proactive stance was required on the issue of organ donation if a register was ever to be successful. There has not been any action on this front at all, apart from the setting up of a website since then, to justify setting up and maintaining a register. When we heard in the select committee that overseas studies show that registers have limited success, and that setting up a register does not automatically guarantee any increase in organ donation, it really made us sit back and think. We are very aware that much more needs to be done. The last thing that we want to do is to set up an organ donor register and actually set it up to fail because the work has not been done. We have not had any public information or education campaigns on organ donation, at all.

As we have heard from other speakers, we are only too aware that the option of becoming an organ donor on the driver’s-licence database does not work, because of the simple fact that the information is recorded for no apparent purpose. No one actually accesses that information. There is no communication with family members. There is no means to specify which organs a person might wish to donate, or even to specify which uses a person wishes to donate his or her body for. I know that my 17-year-old son recently went for his driver’s licence and I asked him which box he had ticked when it came to filling in the driver’s-licence form. He told me that he had ticked “No”, because he did not want to think about that at that particular point in time. Of course, we just have to accept that is how teenagers think; they are more focused on getting a licence than thinking about any other aspect of life at that particular time.

In New Zealand First we believe that more needs to be done to ensure success before a register is set up. We want to see any resources allocated to set up and maintain a register be successful. I would like to emphasise that the door has not been shut by voting against the establishment of a register at this time. I know that Andy Tookey will be very disappointed when he hears this debate tonight, but the possibility of establishing a register is there in the Government Human Tissue Bill. The consent framework is in that bill; the legislation is there.

We are looking forward to future debates on this very important issue, because it will become more important as time goes on. We in New Zealand First support the select committee report and we will be voting against this bill.

SUE KEDGLEY (Green) Link to this

I would like first to congratulate Dr Jackie Blue, as others in the House have done, on bringing the Human Tissue (Organ Donation) Amendment Bill to Parliament and to the Health Committee. Even though she has not won the war, as it were, her bill has made a very valuable contribution to the whole issue of organ donation. I suspect that the Government’s Human Tissue Bill was sped up because her bill was selected from the ballot. The Government had been doing research on similar human tissue legislation, but I think the Ministry of Health was galvanised and the whole work sped up because Jackie Blue’s bill had been selected from the ballot.

We agree with what many speakers have said—namely that this issue is an extremely emotional and also a very sensitive one. Who amongst us does not wish there were more donors, and who amongst us is not aware of the huge shortage of donors there is, not just in New Zealand but around the world? People are already having debates in America about rationing donors so that older people would not even be eligible as donors, only young people. We know that in China they are harvesting organs from prisoners and from people who have been sentenced to execution. They are taking those organs because of the huge shortage in China and everywhere else in the world.

I think all of us wish there were a magic wand we could wave to make more organs available, particularly when we contemplate the epidemic of obesity and diabetes in New Zealand. We know the huge demand for organs there will be. We look at the statistics and realise that only a tiny fraction of organs will meet the need—and it will get worse and worse. So there is a slight feeling of desperation around the whole issue of just how we are going to get enough organs to meet the huge demand as a result of diabetes and other diseases.

When we first looked at this issue, and Steve Chadwick was recounting some of the history—so too was Barbara Stewart who was there when we first began to consider the issue, and I think Judy Turner was, as well—I felt very strongly that not nearly enough was being done, and that, yes, of course we should set up a register. When Jackie Blue’s bill came in I had some concerns about her intention to make a register that would be legally binding—in other words, if people had indicated that they wanted their organs to be used in the event of death, then that would be binding on the family, no matter how much family members might be traumatised by that decision and despite the cultural sensitivities that Steve Chadwick spoke about.

I thought that I would, on balance, support the establishment of a register, but two particular issues persuaded me that, really, we could not, in all conscience, recommend the establishment of a register at this moment. The first was, as others have mentioned, the evidence that was presented to us by intensivists. They said that we might all feel good about setting up a register and it might make everyone feel better, but there was no evidence internationally that it has resulted in an increase in the number of organs available. Given that that is the whole purpose of our debate—to increase the number of organs available—it seems rather pointless to establish a register and raise all those expectations if there is not any evidence anywhere around the world that setting up a register increases the number of organs available. In fact, we were told that in certain areas it had resulted in a reduction in the number of organs available, rather than an increase. That came as something of a shock to me and, I think, to other members. But in the end, as one of the intensivists implored us, we have to look at the evidence. They said we should not just come up with a politically driven decision that might make us all feel good politically but that there is no evidence for and that would not address the fundamental issue.

The second issue was the realisation that only a very, very tiny number of people—I am afraid I do not have the statistics here—would be able to give an organ. First of all, people have to be brain-dead, and there are only a few dozen people who are in the category, firstly, of being brain-dead and, secondly, with organs that are in excellent condition. It is no use having an organ that is diseased, old, or whatever and that cannot be given to another body.

Only a tiny number of people can donate an organ, and I think that that fact is often lost in the debate. People seem to think that if only we had a register there would suddenly be more organs available, and the truth is, sadly, that that is not the case. Only a tiny number of New Zealanders every year would be able to have their organs taken from them once they have died. Secondly, even if there were a register, it would not likely increase the number.

Thirdly, there is the issue, which has also been touched on, of the incredible cultural sensitivity around donating organs and the transfer of organs from dead people into another person. There is no point just sweeping that issue under the carpet. There are very profound cultural issues around death and around the donating of organs from dead people. Amongst Māori and some other cultures there is a set of values that are very different from those of Europeans. We have to recognise and acknowledge those values, which is why the Green Party will be supporting the Supplementary Order Paper from the Māori Party in respect of the Human Tissue Bill. We want to ensure that that legislation is culturally sensitive and is not imposing Pākehā values on other cultures in New Zealand.

I say to Dr Blue that, like everyone else, we will not be supporting the Human Tissue (Organ Donation) Amendment Bill. We recognise that the Human Tissue Bill addresses some of the member’s concerns inasmuch as it has regulatory provisions for a register to be set up if there is evidence to demonstrate that it will be effective. At the moment, that evidence is not there. We have recommended that those regulatory powers be there so that a future Government could set up a register as soon as it is believed that there is compelling evidence that having a register would result in an increase in the number of donors available.

We certainly do not agree with the other aspect of Dr Blue’s bill—that any indication by someone that he or she will donate his or her organs after death should be legally binding. We think that the issues of the family and the whānau need to be taken into account. We congratulate Dr Blue on having this bill selected and considered at the Health Committee. We believe that it has contributed to the debate on organ donation. It has stimulated the debate and it has moved forward the consideration of the Human Tissue Bill. Even though Andy Tookey will not be pleased, because this outcome does not provide the magic bullet solution he and others wish, I think that, realistically, the decision we have come to is a considered decision and the right decision, and perhaps, in time, he too will see that.

Dr PITA SHARPLES (Co-Leader—Māori Party) Link to this

In the Book of Common Prayer there is a phrase that is commonly used in English burial services as clods of clay are ceremonially cast on to the coffin. That saying is “as we commit this body to the ground, earth to earth, ashes to ashes, dust to dust”. It is a phrase that denotes the end of one’s physical existence, the release of that person back into the ground—complete, final; his or her life on Earth done. In very many ways, it bears similarity to the spiritual process that we as tangata whenua, the people of the land, recognise in returning the tūpāpaku, the body, back to the land to the embrace of the Earth Mother. The process of dying typified in sayings like “I whānau tātou ki te mate” is a process that starts at birth, with the burying of the newborn’s placenta back into its whānau land. That process is completed with the burial of that same person as he or she returns to the original spring of life, the great ancestress, Papatūānuku.

The concepts associated with burial—the connection between birth and death—the healing, grieving, and cultural practices of iwi Māori, are deeply steeped in the sense of sanctity, of tapu and kawa. They are not concepts that are easily talked about or understood in this House, but they are concepts that are essential in any discussion around organ donation, strategies to enhance health and well-being, renal disease, and the collection and use of human tissue. These concepts are weighty issues to be considered fully by the whānau, hapū, and iwi when considering the context of life and death. These issues are more than that of an individual signing a register to either confirm or object to the opportunity to be an organ donor. It is a collective process for Māori; one that is absorbed into the process of whānau decision-making. So as we in the Māori Party considered this bill at our caucus, we were always conscious that the views of individuals must always be balanced with the wider context of whānau, hapū, and iwi. The proposal, therefore, to prevent whānau members from being able to override the wishes of an individual is a proposal that clearly privileges the individual and relegates the collective to an inferior status.

Whilst Māori recognise the immense benefit of wider organ donation, and of course are open to consider any solution that may improve the quality of life of a loved one, there are more issues involved than are evident in a medical discussion around kidney, heart, lung, liver, and pancreas transplantation. Tangata whenua are acutely aware of the data. The rate of Māori dying from kidney-related disease is four times greater than that for non-Māori, and Māori receive a disproportionately lower number of kidney transplants than is required. But we cannot resile from the reality that organ donation and transplantation is an issue that is intensely sensitive to our people, as it crosses cultural boundaries and impacts on tikanga Māori.

The answer, as always, lies in the quality of the kōrero. The Ōtākou branch of the Māori Women’s Welfare League made the point in its submission to the select committee that there will be ongoing issues for Māori around organ donation, and that Māori will continue to debate the advantages and disadvantages, no doubt with or without this bill proceeding.

Eight years ago, in 1999, Te Puni Kōkiri produced a guide for the removal, retention, return, and disposal of Māori body parts, and organ donation, which in essence reiterated the absolute need for kōrero or talk to be had with the whānau in the process of obtaining informed consent. That guide, Hauora o te Tinana me ōna tikanga, had itself arisen from the controversy that erupted in 1991 regarding the removal of organs from Māori bodies, either to determine the cause of death or to use for research or transplantation purposes. Some of those cases dated back some 44 years to 1963, and included the removal of the heart of a baby who had died from cot death, organs from an 80-year-old woman, part of the brain from a person who had died from lung cancer, and the heart from a patient in a psychiatric institution. In many cases it had not been necessary to remove the organs to determine the cause of death. The practice broke tapu, breached cultural protocol, and caused unacceptable delays in returning the tūpāpaku to the whānau. Another result of the 1991 controversy was that the then Minister of Justice appointed the first Māori coroner, Gordon Mātenga.

I have taken the time to recall this history because I believe that the hurt amongst our communities, and the suspicion that body parts may be removed without consent being sought from the whānau, have a very recent past. It is a history powerfully told in Patricia Grace’s novel Baby No-Eyes, which is a novel that led to her being named as the 2008 Laureate of the Neustadt International Prize for Literature, which is the most prestigious international literary prize after the Nobel Prize. The novel merges the telling of the contemporary trauma of eyes being removed for the purpose of genetic experimentation and research with the cultural context of mauri, whakapapa, and ira tangata.

When the Code of Health and Disability Consumers’ Rights regulations came in, back in 1996, the rights of consumers included the rights to make an informed choice, to give informed consent, and to be provided with services that take into account the needs, values, and beliefs of Māori. If we as a Parliament are truly to recognise the needs, values, and beliefs of Māori, then we need to understand that this bill, and the Government’s Human Tissue Bill, fall well short of the mark in terms of recognising tikanga in the consent protocols of removing and transplanting organs for whānau Māori.

Whānau, hapū, and iwi Māori need time to discuss the issues involved. In order for Māori audiences to be well informed, information needs to be conveyed in a way that is clearly understood and that reflects Māori world views. Misinformation and contradictions will cause only unnecessary stress. The concern that Māori have consistently expressed that body organs are tapu and should be interred with the body must be listened to and must inform our deliberations. Māori information will be best received if it has been developed and owned by Māori in the first place. The needs of Māori audiences taking part in any debate will be different from those of non-Māori. Māori may be concerned about the impacts on mauri and the implications of states of tapu and noa of organs. There may be considerations about the performance of karakia.

As I said earlier, this debate is a highly sensitive and complex issue of discussion for whānau, hapū, and iwi. We need to feel confident that the health system is able to respond appropriately and sufficiently to issues around protection, informed consent, and Māori control of information and medical processes, and that the health system is fully versed in the management of risks. This bill does not sufficiently allay these concerns, and it is on that basis that the Māori Party will be voting against it at its second reading.

I compliment Dr Jackie Blue; she has done a marvellous job. We have taken this bill up and down the country, and it has given our people the opportunity to debate the issues and come out with things, and to think about their cultural values at this time. I congratulate Dr Blue on bringing the bill to our notice. Thank you.

JUDY TURNER (Deputy Leader—United Future) Link to this

I rise on behalf of United Future to speak on the Human Tissue (Organ Donation) Amendment Bill in the name of Dr Jackie Blue. United Future will be supporting the recommendation of the Health Committee. I want to say that we do so with quite a heavy heart, because this issue is hugely important. I want to congratulate Dr Jackie Blue. I think that she has done the right thing and that she should hold her head high at the end of tonight, because she has kept this discussion going. I would hate to see that what happens to this bill ends the discussion. The fact that, to date, we have been unable to find an appropriate solution and a way forward for this issue should not mean we stop looking.

I believe that there is a stone that we have yet to turn over that would provide us with the opportunity. I have given it a lot of thought, dating back to the time when we looked at the issue when I was on the Health Committee in the last Parliament. My concern for this issue has not diminished. I also want to mention the work of Andy Tookey, who has certainly kept the issue before me. I appreciate every email I get that reminds me that we have young children in New Zealand who are desperately in need of an organ donation and who are waiting for that opportunity. I cannot even imagine what it must be like for a parent to be in that situation.

The fact that tonight we cannot move forward in a substantial way, as was hoped by the sponsor of this bill, I believe does not let this House off the hook in any way. I think it is good that the Government Human Tissue Bill includes provisions for a register. I think it is good that we are keeping the door ajar on that possibility.

Let me tell members a couple of things that have occurred to me and that I think are food for future discussion on this matter. One is that we acknowledge that the current system, whereby people notify on their driver’s licence their willingness to be a donor, is an inappropriate mechanism. When people go to sign up for their driver’s licence they are not thinking about organ donation; they are thinking about getting their driver’s licence. So there is a very big mismatch there with people’s intentions. But it occurred to me the other day as I was lying down giving blood that when one is in blood donor mode one is in donor mode. It occurred to me that that would be an ideal opportunity for information to be provided to people who are already open to the idea of donation—particularly information that would send them home to have those all-important discussions with their family. The crux of the matter is that people need to have clear and deliberate discussions with their families about their wishes and intentions should they be on life support, and the family has to make some very important decisions regarding organ donation. I think we miss a hugely good opportunity there to have that discussion.

The second solution or possibility I would like to put to this House today is that in the last year or so in Parliament we have begun the process—and I think the Minister of Health has been instrumental in this—of setting up some cross-party support groups around a number of health issues. One is around diabetes. I recently went to the inaugural dinner of a group to set up a support group on the issue of Alzheimer’s disease. Cross-party discussions are a very good initiative by which we keep the issues alive. We understand that they are not controversial issues; we all want a solution. Therefore, cross-party discussions are hugely helpful. It occurred to me that maybe we need one around organ donation. Maybe we need to form a cross-party group that gets together on a regular basis to hold meaningful discussions and look at what other jurisdictions are doing. We could discuss, for instance, the issue of how we progress the discussion in Māori and Pacific communities, where the needs are often the greatest. I would hate to see that tonight ends this discussion. I think we have a lot more to consider.

I think the Green member Sue Kedgley also raised an interesting point when she said that one of the reasons we need to respond to the rising rates of obesity is that a consequence of leaving it unaddressed is that the rates of people needing organ donations are going to skyrocket. Surely the need to discuss and look for more solutions to this matter must be part of that discussion.

We in United Future would like to put up our hands and say that if the will of the House—and, in particular, of the health spokespeople across Parliament—was to continue this discussion in some way, maybe outside the select committee and the debating chamber, we would be keen participants in that. We think it is a very noble cause. Our current low rate of organ donation is not something we can be proud of as a nation. We need to be doing better. Obviously, the solution that is put forward in this bill is unworkable; therefore, we are unable to support it. I finish by congratulating the select committee and Dr Jackie Blue, and signaling that we will be supporting the recommendation of the committee.

Dr JONATHAN COLEMAN (National—Northcote) Link to this

I think it is a real shame that the House is missing this opportunity to institute a voluntary organ donor register, because there is a real need in society for donated organs. The situation is getting worse and worse all the time; there is no question about that. We heard a lot of evidence from people at the Health Committee that with the rising rates of diabetes and liver disease, we will not be able to meet the demand for organs this country will have over the coming years. We heard that there were only 26 organ donors in this country last year, and when we think about the explosion of disease that results in organ failure, it is quite clear that there is a real mismatch between the supply and the demand of organs.

I think it is very disappointing that Labour members have not taken the opportunity to support this Human Tissue (Organ Donation) Amendment Bill, because in their manifesto last election, Labour stated that it would support an organ donor register, and if that is not a flip-flop, well, I do not really know what is. This would have been a great opportunity to do something positive for the country. This really was an opportunity for the parties across this Parliament to get together over this bill and actually do something positive.

The Ministry of Health said that there was no evidence. Well, we heard that several jurisdictions around the world are already instituting this type of donor register. If it is good enough for the Canadians, for places in America, and for states in Australia, then one would have to wonder why we are not doing this in New Zealand.

There was a time when, with the high road toll in this country, there was, unfortunately, a ready supply of donors. It is good that that road toll problem has been greatly improved over the years, but it has left us with the issue that we have only a very few people come forward to donate their organs at death. I just think that if we had a greater degree of education on this issue and promoted that through the institution of the register that Dr Jackie Blue was proposing, then we would start to go some way towards meeting that demand, because the situation at the moment means we will have New Zealanders on waiting lists dying this year because there are no organs available. We will have people dying of kidney failure, with end-stage diabetes and end-stage renal failure, and people dying of liver failure—people who could have been living and making a real contribution to society if an organ register had been instituted and if they had been able to get the vital organ that would have given them the gift of life.

We heard from a lot of families during the select committee process who said that it had made a massive difference to them personally to know that when their family member had passed on, that person had the opportunity to give life to someone in need, and some very moving tales were told. But we also heard evidence from intensive care specialists who were unwilling to take on the burden of responsibility involved in asking bereaved families whether they would be prepared for their loved one to give up an organ after his or her death. The problem we have at the moment is that if we register on our driver’s licence as an organ donor, there is absolutely no guarantee that someone will not overrule that wish once we have passed on. The National Party position is that if one makes a decision about what will happen to one’s body after one dies, then that should be absolutely binding and no one else should be able to overrule that decision. We feel that the organ register that Dr Jackie Blue was proposing would have greatly increased the supply of available donors and that it would have gone a huge way towards making sure that more New Zealanders would be able to live past end-stage organ failure in the years ahead.

I will pay tribute to Andy Tookey, who has really been the impetus behind this bill coming before the Parliament. Andy Tookey got in touch with Jackie Blue earlier this year and he explained the tragic situation that his family have been in. They have a lovely little girl who has end-stage liver failure and is waiting for a donor organ. That very brave little girl came and spoke before the Health Committee, and that really personalised for us the situation that many New Zealand families are finding themselves in. I would say to Andy Tookey that he should not give up on his goal of getting this register established, because I think that it is only a matter of time before it happens, and he certainly knows that he has the National Party’s support the next time this matter comes before the Parliament.

It is amazing when we think that there were two select committee reports that recommended the institution of this register, and that donor registers have been taken up in so many jurisdictions overseas. It is very difficult to face the fact that this Parliament is now to vote this bill down, but I think that this issue will raise its head in the future. It will not go away. There were only 26 organ donors this year, and I am sure that there may well be fewer next year, although hopefully some of the public debate that this has brought up will actually make people want to come forward and give their organs after death, despite the fact that we do not have a register.

One of the problems with organ donation is that when we pass on from this life it is not just anyone whose organs are fit to be donated. So when a person is deceased, it does not automatically follow that that person can give his or her organs for medical purposes, especially for live medical purposes, or transplantation to a live recipient. I alluded earlier to the change in the road toll, and we actually need to have the organs of someone who has been recently deceased, usually in an accident. Of course, in those circumstances people are not generally expecting death. It comes tragically and suddenly, it is a massive shock for the family, it is obviously totally unexpected, and very often the family has not discussed the issue of organ donation, especially if it is a younger person who has passed away in an accident. That person might have made his or her wishes known by writing something on his or her driver’s licence, but the real issue is that that wish can easily be overridden. All it takes is for a family member to say to a doctor in the intensive care unit: “No, I do not actually want my spouse”—or that person’s brother, son, or daughter—“to give up an organ. We have never discussed it and, frankly, I do not feel comfortable with that.” But if we have a register, and we put informed consent and the right of the individual to determine what happens to his or her body at the heart of this debate, then I think we will find a lot more organs will become available.

There is also the issue of cultural context and different cultural practices, which came up in the course of the debate. I think that an issue that people need to consider is that at some stage we, or members of our family or of our group, may need to be the recipient of an organ, and if we are prepared to be the recipient, then we need to give more thought to the issue of whether we are prepared to be a donor. I think that issue will be a very, very important issue for some of our communities to discuss, because I know that keeping the whole body intact after death is a cultural issue for Māori and Pacific Island people, especially, but we also have to face the fact that the rate of diabetes and liver disease is on the rise. Many people from those communities will need organs and we have to look at where those organs will come from. Unless New Zealanders, as a people, come to the party and say that they are prepared to become organ donors and to support their families and whānau in their desire to give up their organs after death so that someone else can have a chance at life, then I think we will be faced with a situation where increasing numbers of New Zealanders will die earlier and needlessly because there are not the kidneys available to keep them alive and there are not the livers available to give them another chance at life. I think that is really what this issue is about.

An opportunity has been passed up, but I do not think that this issue will go away. I think that this legislation will come back before the Parliament, and that there will be a petition to the select committee at some stage. I hope that in the light of this debate parties may reconsider their position in the future, so that we end up having a donor register for the good of all New Zealanders. Thank you, Mr Deputy Speaker.

SUE MORONEY (Labour) Link to this

Thank you, Mr Deputy Speaker, for the opportunity to speak to the second reading of the Human Tissue (Organ Donation) Amendment Bill, which is a member’s bill put forward by Jackie Blue. I do congratulate Dr Blue on the work that she has done, because drafting such a bill, I know, is no mean feat. I hope the member feels proud of her efforts in bringing the bill through to its second reading and in knowing that it has encouraged further discussion of this very important issue.

I want to refer to a comment made by the member who has just resumed his seat, Jonathan Coleman, about an assurance that the National Party would back this bill. The bill was considered by the Health Committee and that member was on the committee. It is interesting to note that the bill was unanimously opposed by the Health Committee, which means the National Party team on the committee did not vote in favour of this bill, either. So the assurance by the National Party needs to be seen in that light.

However, I want to make sure that people who are listening to this debate understand what has occurred. This bill is one of two bills that the select committee heard concurrently on the issue of organ donation. Labour supported Jackie Blue’s member’s bill only to the select committee, because we felt it was important to debate the specific issues about an organ donation register and the idea that an individual’s wishes would override family members’ wishes in regard to organ donation, for example. We wanted to debate fully those issues, and that did occur in a very full debate in the select committee, through the very many heartfelt submissions we considered.

This bill sought to establish a register to make legally binding a donor’s decision to donate, whereas Labour wants the family of a deceased to have some power of veto in exceptional circumstances. The Health Committee recommended that the bill not be passed, as a register is considered unnecessary at this time. I stress “at this time” because the Government bill does enable a register to be established and sets up the framework for such a register to be established, should there be evidence that shows that the very expensive exercise of setting up a register would increase organ donation. The Health Committee was told that the international experience is that even when considerable time, effort, and finances were spent on setting up such a register, it did not necessarily mean that the rate of organ donations climbed. In fact, in some international examples the rate of donations dropped. I am not going to stand here and argue that the drop was because a register was put in place. In fact, the international trend is that organ donation rates are dropping across the board. That information and evidence told us that the formation of a register was not, in itself, an answer to the problem.

There is no doubt that all of the parties represented on the Health Committee, and I feel sure all of the parties represented in this House, agree on one thing—that is, when it comes to the issue of organ donation all parties would want to find a solution that increases the number of people prepared to have their organs donated, in the event of their untimely death. It is a difficult issue to discuss, because we are in the business of talking about the unthinkable. It is the unthinkable that we are now encouraging families to consider and sit down and have a good discussion about. The unthinkable is an untimely death, an early death, a premature death of a family member or a close loved one.

The Health Committee recommended a clause in the Government’s Human Tissue Bill—which was passed by the committee—to permit the establishment of an opt-on organ and tissue donor register, should it prove desirable in the future. I want to spend just a small amount of time talking about some of the submissions that the committee considered, and, in particular, I wish to clarify some of the statements made by intensive care specialists, who have been spoken about quite a lot during this debate. Although we have aligned the views of the intensivists to that particular group of people who work in the intensive care units, who are the people in the front line dealing with families in these very traumatic situations, it is important to give the full picture of what they were saying to us. Although it was coming from that particular group of health professionals, it was in no way a discussion about health professional capture, as some people listening to this debate may be reflecting on. In fact, they said to the committee that they did not want to be in the position where they were dealing with a family who was traumatised because of the untimely death of a loved one, and where the health professional was saying to the family: “Irrespective of how you feel about this, we are going to override your views and your concerns, and we will be taking out the organs of your loved person, despite your views on this issue.” They did not want to deal with that in that very critical period of time when there is much trauma going on for the family, in any case.

Although this was the view of a group of health professionals, I believe that what they were telling us was about the impact it would have on families already traumatised and then needing to deal with an issue that may be culturally alien to them, that may be alien to them for a range of spiritual reasons, and then the family feeling that they were completely disempowered, yet again, by having a medical professional telling them the professionals would do this against the will of the family. We had to take that view into consideration, because it was a very real issue faced day in and day out in the intensive care units in our hospitals up and down the land. It is a very serious issue.

The Government’s Human Tissue Bill aims for a balance between respect of the wishes of the deceased person and the cultural and spiritual needs of the family. Unfortunately, the select committee found that Jackie Blue’s member’s bill did not acknowledge the needs of the deceased person’s family, and that was an issue we could not escape. The Government’s Human Tissue Bill is broader in scope than the member’s bill, and that is to be expected. There are, of course, many more resources available to the Government to consult widely and to hear all of the views and put those into a Government bill, and members do not have that ability to do that. So the Government bill will regulate the collection and use of tissue from dead human bodies, as well as dealing with this issue of organ donation. It will also regulate trading in tissue, export and import of tissue, and the use of tissue for non-therapeutic purposes.

The Government bill will ensure that collection and use of human tissue occurs with dignity and with respect for the deceased individual and his or her family, and others who were in a close relationship with that individual. A key aspect of the Government bill is the establishment of a new consent framework for the donation of human tissue. I believe that dealing with these two bills concurrently in the select committee has done one very important job. As well as bringing a new legislative framework around the issue of organ donation and the use of human tissue, as it has done with the Government bill, I believe that it has provided a very good educational platform for families to discuss this very issue. As a member of the Health Committee I certainly urge people who have not done so already to have this discussion with their families—to discuss the unthinkable—“What would I want done with my organs in the event of my untimely death?”.

These are tricky issues. They are very emotive issues but they are very real issues. In closing, I again thank Jackie Blue for all of her hard work on the bill. I think it was a very good process that we went through in the select committee, so I also thank the chair of the committee, Sue Kedgley, who enabled us to discuss these two bills in the fullness of what they deserved to have discussed about them. Thank you.