Hon DAVID CUNLIFFE (Minister of Health) Link to this
I move, That the Human Tissue Bill be now read a third time. The bill was introduced in November 2006 to update the Human Tissue Act of 1964. The bill provides a framework for regulating the collection, storage, and use of human tissue, primarily from deceased people. It also regulates trading in tissue, the export and import of tissue, and the issue of tissue for non-therapeutic purposes—for example, research, education, audit, and anatomical examination. The bill was examined by the Health Committee, which reported the bill back with some amendments, and I take the opportunity to thank the committee for its careful consideration of the bill, which I think has resulted in some improvements to the bill.
Firstly, on the consent framework, the bill makes informed consent the fundamental principle underpinning the lawful collection and use of human tissue. It replaces the use of lack of objection in the Human Tissue Act 1964 with informed consent, which is consistent with the Code of Health and Disability Consumers’ Rights. By specifying who may give consent for the collection and use of human tissue, the bill clearly provides for organ and tissue donation, and the collection and retention of tissue at a post-mortem examination.
The bill specifies a hierarchy of people who may give informed consent to the collection and use of human tissue. In general, the primary consent will be that of the deceased before he or she died, or of someone nominated by the deceased person to consent on his or her behalf. In the absence of consent to donation by the individual or the nominee, the decision will be made by the immediate family. The bill provides for decision making by a close available relative of the dead individual if the immediate family is unable to reach a decision.
The bill as introduced provided that the immediate family could not give consent unless a majority of the immediate family agreed with the decision. The committee recommended that the need for a majority decision be removed. This amendment means that a member of the immediate family may give informed consent or raise an informed objection once it is clear that all capable family members accept—or would, if consulted, accept—that decision. The amendment allows family members to reach a decision in whatever way is appropriate for them, as long as they agree collectively with the decision.
The bill describes some situations where the consent framework operates slightly differently. The Health Committee recommended the inclusion of flowchart diagrams to aid understanding, which I agree has improved the bill. The bill provides some exceptions to the general rule that informed consent is required to collect or use human tissue—for example, where tissue is collected or used under the Coroners Act 2006 or for criminal justice purposes. The bill also recognises that there are certain limited circumstances where, because appropriate safeguards are in place, the public good associated with the use of tissue outweighs informed consent requirements—for example, certain research where this is approved by an ethics committee.
On the matter of informed objection, one of the key amendments recommended by the committee is the introduction of informed objection. The amendment recognises the ability of decision makers to object to the use of human tissue as well as to consent to it. Both informed consent and informed objection will now have legal standing and will prevent others from consenting or objecting. Nevertheless, there will be situations where it might be appropriate for the collection or use of tissue to not proceed, even if a valid consent has been given. The bill now provides that clinicians and researchers need not act on a valid consent, as appropriate, and that organ donor coordinators, transplant surgeons, and others should be free to decide not to act on informed consent if the information available indicates that they should not do so, without fear of prosecution.
The committee had a considerable discussion about cultural issues and human tissue collection and use, and it recommended two amendments to give greater recognition to the culture of the immediate family. The first requires decision makers to take into account the cultural and spiritual needs, values, and beliefs of the immediate family. We want to encourage individuals who want to make a decision about the collection and use of tissue after their death to consider the impact of their decision on their family, but we also want individuals to retain the right to make a decision that the family does not, in the end, agree with.
The second amendment requires the person collecting or using human tissue to take into account the cultural or spiritual needs, values, and beliefs of the immediate family. It is entirely appropriate for clinicians, researchers, and others collecting and using human tissue from a deceased individual to do so with the proper recognition and respect for the immediate family. In the Committee stage the Māori Party proposed that families be given the power to veto the consent given by Māori individuals while they were alive. Although it is considered appropriate that cultural issues be adequately considered during this process, it was not felt to be appropriate to give families a legal right to override an individual decision.
I take this opportunity to acknowledge the support this bill has received from both the major and the minor political parties. I commend this bill to the House, in order to provide clarity on the consent requirement for the collection and use of human tissue for the public, the clinicians, and others involved in the collection and use of tissue. In doing so I wish to thank members all around the House who have served on the select committee and who have been involved in the process. I wish to thank the officials and all those who have been consulted on the production of the bill, which I now commend to the House for third reading.
Dr JACKIE BLUE (National) Link to this
The National Party supports the Human Tissue Bill, which is a Government bill. It replaces the Human Tissue Act 1964, which needed updating. When this bill was heard at the Health Committee it was heard alongside my member’s bill, the Human Tissue (Organ Donation) Amendment Bill, which had been facilitated by Andy Tookey. Andy had for a number of years been a campaigner for increasing organ donor rates in New Zealand, and he felt that a register was the way to go. The two bills were heard together and there were a number of submissions on both bills. The member’s bill allowed for a voluntary, opt-on organ donor register, where the donor’s wishes were legally binding. Unfortunately, support was not found for the member’s bill, but there is provision in the Human Tissue Bill—the Government bill—to allow a future Government to be able to regulate for a register if organ donor rates do not increase.
The organ donor rates in New Zealand have been appallingly low over the last few years, and there are a number of reasons for that. In particular, there is an increasing need for donated kidneys, with renal failure being the end-stage problem of diabetes renal issues, and there has also been a higher threshold. Where people are needy, they could have organs if they become sicker. This is not only New Zealand’s problem; it is an international problem. Many countries have taken on organ donor registers as the way to fix the problem. Already recently this year, in March, there were some media releases reporting that Michigan was strengthening its organ donor rights, and it is joining the national momentum to bring uniformity to organ donor laws in the United States. There is also Winnipeg, which is calling for a national organ donor register, as is Wisconsin. Many countries around the world are doing the same thing, including the United Kingdom. Even Gordon Brown was recently in the news, calling for there to be a presumed consent register in that country, and that bill is being debated at present.
It was with great sadness that I say we did not get support for the member’s bill, and now we are left with the situation where a future Government can provide for a register if organ donor rates do not increase. At the present time we do not have anything. We have a driver’s licence consent but that does not mean anything. It is not informed consent, so that is ignored. We really are relying on the public to tell their close relatives that they would like to donate, and hope that their close relatives will do the right thing. Otherwise, living wills are the only other way that people may dictate their wishes—how they wish their organs to be used, or not, as is the case.
There was much talk about a public information and public media campaign that would be needed to go alongside, to increase organ donor rates. But, quite frankly, we have heard nothing since. There has been much discussion, but there have been no hard facts, about when this organ donor information campaign might begin. The basic framework of the Human Tissue Bill is that it provides for informed consent, so that an individual’s rights have primacy. Members on this side of the House find it hard to see how, without an organ donor register, we can have an informed consent process for this.
So it is with sadness that I say the member’s bill was not supported. There is provision in the Government bill for a future organ donor register, by a future Government, if organ donor rates do not increase. I guess the spotlight now is on Organ Donation New Zealand, which is the organisation seen to increase organ donations in New Zealand. I know that it has its own structure, and its own way it wishes to go about increasing donor rates, and I think the spotlight will be on that organisation. Thank you, Mr Speaker.
LESLEY SOPER (Labour) Link to this
I rise as deputy chair of the Health Committee to speak on the Human Tissue Bill. I thank the Minister for shepherding through this very important bill, and the Health Committee gave it very careful consideration. I intend to give the House a bit more background on the wider policy issues that led to the bill’s introduction. I also wish to take a little time to speak on the issue of maximising organ and tissue donation in New Zealand.
The policy behind the bill was informed by a review, which included public consultation undertaken by the Ministry of Health on the regulation of human tissue and tissue-based therapies. The review identified concerns about the current consent framework for the collection and use of human tissue. The Minister has already discussed how these concerns have been addressed in the bill, and the amendments recommended by the select committee. The review also highlighted issues relating to the regulation of the non-therapeutic use of human tissue, import and export of tissue, and trading of tissue.
The non-therapeutic use of tissue is currently largely unregulated, with the exception of the schools of anatomy. The review found general agreement that an overarching standard for the non-therapeutic use of tissue was needed. The reason for such a standard was the need for clarity and consistency, and to allow for monitoring of the processes around tissue use. The bill will ensure the safety and quality of the non-therapeutic use of human tissue through standards prescribed or approved by regulation. These standards will apply to the collection and use of tissue for research, education, audit, diagnosis, post-mortems, anatomical examinations, and other non-therapeutic purposes. The bill contains additional requirements for schools of anatomy, including licensing of the schools, given the invasive nature of anatomical examination and the need for public confidence in that process.
The ministry’s review found general support for a more comprehensive oversight of the import and export of human tissue, to address issues such as safety and ethical concerns. Many respondents supported the import and export of tissue for quality assurance, peer review, diagnostic purposes, and transplantation purposes, where adequate safety levels can be assured. The bill provides for regulations prescribing or approving requirements and standards for the import and export of human tissue. This will, if necessary, permit rigorous monitoring of safety and quality. The bill also provides for requirements relating to informed consent for imported tissue. These provisions will enable more stringent informed consent requirements for particular types of tissue—for example, human embryonic stem cell lines. The ministry’s review found general support for a prohibition on the sale and purchase of human tissue, but found acknowledgement that there should be some allowance for recovery of reasonable administrative costs associated with the collection, analysis, and processing of that tissue. The bill repeals Part 3A of the Health Act 1956, which regulates trading in blood and controlled human substances, and replaces that with a similar but extended provision, covering, for example, trading in all human tissue. The sale and purchase of human tissue, including blood, will, as a general rule, be prohibited.
I will move on to the maximising of organ and tissue donation. During the select committee process a number of submitters took the opportunity to discuss organ donation and various solutions to increase the donor rate within New Zealand. Much of that comment did not relate specifically to parts of the bill, with the exception of an organ and tissue donor register. The key debate raised amongst submitters—and Mr Tookey has been mentioned—was whether there should be a national organ and tissue donor register in New Zealand. It is fair to say that all submitters were united in their desire, as was the committee, to see the rate of organ donation increase in New Zealand, but the views of submitters differed markedly on the best way to achieve that result.
To provide some context for the debate and to explain to people listening to Parliament what the select committee had to consider, as of January 2007 there were 433 people on the waiting list in New Zealand for a kidney transplant, 13 for a liver transplant, five for a heart transplant, eight for a lung transplant, and four for a pancreas / kidney transplant. Even if organs were retrieved from every potential deceased donor, the supply, particularly for kidneys, would still fall far short of the demand for them. Kidney transplants from deceased donors can only ever be a small part of the response to growing levels of kidney failure amongst New Zealanders. Only a very small number of New Zealanders die each year in circumstances that allow them to become organ donors, and this was something that surprised many of the committee members and many of the members of the public who were there during the submission process as we heard submissions. There is a belief that there are many organs that are just not being harvested in New Zealand.
Organ donation is possible when an individual is determined to be brain-dead, prior to their blood circulation ceasing, and this occurs only within an intensive care unit in a New Zealand hospital. A 2002 estimate put the number of medically suitable potential donors per year in New Zealand at approximately 100. In recent years there has been a reduction in brain death rates in intensive care units, due to a declining road toll and continuous improvements in clinical practice and survival rates from trauma. Data from Auckland City Hospital, for instance, shows an overall trend of fewer patients becoming brain-dead, with a reduction by about a third between 2000 and 2006.
When the bill was introduced, the Minister encouraged members on the select committee to carefully examine the international evidence on the impact of registers on organ and tissue donation rates. The committee did that, and recommends that a register not be established at present. However, what we did recommend includes a clause that permits the establishment of an opt-on register by regulation at a later date, should it become desirable to do so. We believe that that may happen in New Zealand. It will happen when the international evidence tells us that registers are useful in increasing donor rates. That evidence was not given to the select committee. What we were given was evidence that showed that registers are currently not a significant influence on the number of deceased donors available for transplantation. Other factors such as the religious and cultural views towards death and the body, the predominant cause of death, and the number and efficiency of the transplantation coordinators make a more significant contribution to the number of organs and tissues available for transplants.
We had a great deal of evidence, to come to the recommendation we made on organ donation. We know that Organ Donation New Zealand is developing a system of death audits in intensive cares units that, when implemented, will provide more information on processes such as identifying potential donors and requesting donations from families. Although it is reassuring to see that the number of deceased organ donors in New Zealand was higher in 2007 than in 2006, so far none of these approaches will result in a sufficient supply of organs to meet current or likely future demand. The best hope for reducing the excess demand for transplant tissue over time is to reduce the preventable causes of demand for organs such as type 2 diabetes.
This bill is a very carefully considered bill. We believe that the recommendations we have made to the House to improve the bill are very substantial and we are very proud to commend it to the House.
JO GOODHEW (National—Aoraki) Link to this
I rise to take a very brief call on the Human Tissue Bill, because I have been part of the debate throughout this bill and part of the Health Committee, which considered the bill. I take this opportunity to pay tribute to some of the people in my electorate, but also to the people of New Zealand who took the time and steeled themselves to make what was often an emotional plea to the committee to get it right in this bill. They were people who have, in some way, had their lives touched by organ transplants, and who felt that this bill could make a difference for New Zealanders in the future. Those people came before the committee and told us their stories.
I think it would be fair to say that if we looked at the front covers of the women’s magazines over the course of a year, we would almost always find that in the course of a few months there is a story about transplants or the incredible gift that is made when a family manages to steel itself to donate the organs of a loved one for the benefit of many other New Zealanders. On this occasion I pay tribute to those people and say that we hope that this bill will, in some way, improve organ donations. I understand my colleague Dr Jackie Blue’s concerns about the lack of a register, and we thank the members on the other side of the House for their assurance that that will continue to be on the page, so to speak, and will be considered in the future. Thank you, Mr Assistant Speaker, for this opportunity to pay tribute to those people. I was proud to be on the select committee and to hear those submissions at the time.
BARBARA STEWART (NZ First) Link to this
New Zealand First supports the third reading of the Human Tissue Bill. This bill was very carefully considered by the Health Committee. It is a very important bill that has far-reaching implications for many organisations, universities, and research institutions right throughout New Zealand. The submissions we heard during the select committee process made us very aware of the research and development that is being carried out. It is vitally important that this continues. The bill also has implications for the many individuals who were hoping that it would see the establishment of an organ donor register. Unfortunately at this time the latter group is going to be very disappointed, but I remind them that there is the provision within this legislation to ensure that an organ donor register could be set up at some later stage.
One of the many issues that were extensively discussed during the process was the trading of tissue. Not one of us wants to see organs and tissues traded on an open market, but there is a very real need for researchers and medical scientists to have access to the tissues they need so that research can be carried out. Some of this tissue is currently imported from many research institutions right around the world. We know it is absolutely essential that all of the vitally important research into human cell lines continues. This type of research is absolutely essential for scientific knowledge, as well as for the wellbeing of the health and development of the population at large. We are also very aware that at this point in time there are many conditions and diseases that are difficult to diagnose in a standard laboratory analysis. Because they are difficult to treat, it makes it very important that there are research institutions able to get this tissue. For the people managing this condition, it is the best hope that we can currently offer them. This is a situation where we had to look at the needs of our society. We would not want some of the fine learning institutions around the country to be handicapped because they did not have access to those tissues and materials that they needed to carry out research.
The bill is important. It is far-reaching, covering the regulation and the use of tissues from dead human bodies. It sets up a framework for informed consent for tissue use. It is a very complex bill.
It also regulates the export and import of tissue and the use of tissue for non-therapeutic purposes. When we look at the use of human tissue in a wider context, we see that it is important that researchers are aware that this bill does not make lawful any activity that is currently prohibited. As has always been the case in New Zealand, a person cannot sell their own tissue or tissue from a body that they are responsible for. I think the very last thing New Zealanders would want to occur is financial consideration for human tissue or human organs. We believe that the gift status these donations have been accorded must remain.
The bill also allows for the setting up of an organ donor register at some future time, when there is sufficient evidence available to establish an opt-on register. We considered this issue at length in the select committee, and discussed it very extensively with the officials. The data that the committee received from overseas countries regarding the mandatory establishment of an organ donor register does not show that setting up an organ donor register at this point in time results in increased numbers of people donating organs. We will follow this argument with interest as the converse can also be argued: without such a register, how can people indicate their wishes to be an organ donor? Here we have to acknowledge the tireless work of Andy Tookey for promoting an organ donor register.
Many people believe that their driver’s licence wish will be honoured, but it is a sad fact that the Land Transport database system remains a separate, stand-alone system with no transfer of the data to any health information system. Often one’s immediate family does not know what options are being ticked by the individual when he or she obtains or renews his or her driver’s licence. I have to count myself among those people who do not know what is on their spouse’s driver’s licence, but I do know what is on my son’s driver’s licence. We are only too aware that the Land Transport database cannot work, and it makes one question why one has to give an indication on a driver’s licence when it is of no value whatsoever. People advising the Land Transport system that they wish to be an organ donor is only an indication of their wishes. It is not legal consent for donation. This has often left grieving families unsure about what to do, so usually nothing is done.
In New Zealand First we believe that an extensive public marketing campaign is required for an opt-on organ donor register to be successful. Without this the problem of organ donation will always stay in the too-hard basket. There has basically been no public action at all since 2004 when the select committee recommended that a legally binding register be set up. We are very aware that organ donation rates are low, and aware too that clinical practice means that more people are now saved after being in car accidents or after suffering other trauma. The setting up of a register and a public information campaign need to go hand in hand, as the bottom line is that any register cannot be set up to fail. A register is expensive to set up and maintain, and it is essential that the additional resources result in an increased rate of organ donation. I think too that we have to be aware that not every organ can be used for transplant. The criteria are extremely stringent—as one would expect—and only a very small number of people actually meet them. Again, that is a situation we would expect.
The donation of organs can sometimes be controversial for families, particularly at a very stressful time in their lives. The select committee tried very hard to clarify the consent process—hence the flow charts included in the bill. In New Zealand First we believe that the bill should provide informed consent requirements and informed objection. Those must be met before any tissue collection or use. The bill has successfully set out to do that.
This issue will not go away. It has not been completed to the satisfaction of all New Zealanders. However, I remind people that the potential is there to develop an opt-on register. It was very interesting to hear from a few submitters over the course of submissions to the bill that some people believe that there should be mandatory harvesting of organs because the person would not need them any more and the health system would actually save millions and millions of dollars because people would not have to have the expensive treatments or medications they needed while they were waiting for an organ donor. That was a very interesting concept, we thought, but far beyond the scope of this bill.
In New Zealand First we believe that the bill clearly sets out the processes that need to be followed for the collection and use of tissue from human bodies after death, and sets up a framework for informed consent for human tissue use. It also regulates trading in tissue, the exporting and importing of tissue, and the use of tissue for non-therapeutic purposes. New Zealand First supports this bill. It needed updating and reviewing and we are pleased to have been part of the process.
SUE KEDGLEY (Green) Link to this
The Green Party is very pleased to support the Human Tissue Bill. I would really like to start by thanking the Health Committee for its very careful consideration of this very complex legislation. On the one hand the bill is extremely complex, dealing with a very wide range of issues; on the other hand it deals with quite an emotional subject, which touches on very sensitive cultural, spiritual, and emotional issues.
I believe that on this bill we had an example of a select committee working at its best. We went in with a very open mind. We listened to the evidence. We had very conflicting evidence: on the one hand people like Andy Tookey implored us to set up a register; on the other hand the intensivists implored us not to set up a register. They said it would not work for intensivists and that, above all, it would not increase the number of organs that are donated in New Zealand. So there were widely polarised views and some very, very compelling evidence from people who had experience with organ donation. We did our very best to steer our way through it all and come up with a bill that I think is a very reasonable compromise—not just a compromise but actually the right policy at the present time.
I know that when we began to consider this bill, I assumed I would favour the establishment of an organ donation register. The reason I assumed I would favour a register was that the Green Party is very keen to see an increase in the number of organs that are donated in New Zealand. Like other parties in this House, we are very, very concerned about the extremely low rate of organs that are donated, and it seemed to us that a register would be one way of increasing the number of organs that were donated. But in fact when we listened with an open mind and looked at the international evidence, we heard and saw that there was no compelling evidence that establishing a register would result in more organs becoming available. Because that was our overriding objective, it did not seem sensible to recommend the rather expensive, quite complex establishment of a register if it would not achieve the purpose of increasing the number of donated organs.
One of the things that most surprised me during the select committee deliberations was the realisation, which previous speakers have alluded to, of how few organs can be, if you like, harvested from people in New Zealand. I just assumed the problem was that organs were available and that all we needed was for more people to give their consent to having their organs harvested at the time of their death. I assumed that ipso facto that would increase the rate of organs being donated and would solve the problem. So it was actually a great surprise to learn that it would not matter how many people had actually signed a register and said they would consent to having their organs harvested at the time of their death. It would not matter how many people had signed such a register, because there would be only an incredibly small number of people every year who would, in fact, be able to have their organs harvested. As previous speakers have said, they estimate that about 100 people in New Zealand could be suitable. First of all, those people have to be brain-dead, have to be in intensive care, and have to have organs that are in a good condition—they cannot have any old organs.
So when one actually looks at that, one realises that simply having a register will not solve the problem. It could be a step in the right direction, but it has not proven to be so internationally. The reality is, unfortunately, that there will only ever be a very small number of people whose organs will be able to be harvested. What we have said, as others have pointed out, is that although there is not any compelling evidence yet to recommend establishing a register, should that evidence be forthcoming—in other words, if, when we continue to look at the international experience, we find that in those countries that have registers it results in an increase in organ donors—then without requiring further legislation, by a simple regulation a future Government can establish a register. So the provision for a register is there. It can be done relatively easily, but we require that we do it based on evidence, rather than just because it feels good and so politicians can say “Look what we’ve done; we’ve established a register.” There is not much point in doing so if we know that the register will not result in an increase in organ donation rates.
The other thing I will make a point about is that more and more people in New Zealand will require donated organs. In fact, some people are saying there will be an explosion in the need for donated organs in coming decades, because of the incidence of obesity and diabetes and the number of people who will need renal dialysis. Unless we do seriously get into preventive measures, such as improving our diets and the quality of the food we eat, we will have an explosion in the number of people who need donated organs. In the United States, the number of people who are waiting for kidneys has more than doubled over the past decade, and the average person waits more than 3 years for an organ. Authorities in the United States are debating whether to set up a rationing system, and are considering, for example, giving priority to young people and saying that older persons, people over the age of 70 or 79, would not be accepted for organ donation. So that sort of thing is already being debated overseas.
I think the real lesson for us is that we will not solve that problem with, if you like, the ambulance at the bottom of the cliff. The only real solution is to reduce the number of people who are developing preventable diabetes—type 2 diabetes—obesity, and other diet-related chronic diseases. Only in that way will we begin to manage the issue. We will not manage it by simply setting up a register as if that is somehow a magic wand.
Finally, I would say that the Greens supported an amendment to the bill by the Māori Party to require that the whole whānau be involved in consenting to tissue donation. Unfortunately, there was not sufficient support in this House for it, and we are disappointed in that. We felt that very compelling evidence was given that the spiritual beliefs of tangata whenua around death and dying must be respected in organ donation, and we do not think that the bill does address the concerns of Māori. We wish that that amendment had been accepted. Nevertheless, we feel that overall this bill is very good legislation. As I said, and as others have mentioned, it deals with many other complex issues that I have not even touched on, such as giving much greater oversight to the import and export of tissue, and more stringent informed consent provisions around the use of human embryos. There are complex but very important issues, such as the licensing of schools that use human tissue. The issues are very important and very complex. I really do believe that the Health Committee considered this bill very deeply and in a very wise fashion, and has come up with amendments and a bill that I believe are the most appropriate way forward at this point in time.
Hon TARIANA TURIA (Co-Leader—Māori Party) Link to this
Kia ora, Mr Assistant Speaker. Kei te rere kē te wairua o tēnei pire.
[Thank you, Mr Assistant Speaker. This bill has a strange spirit about it.]
Just under 10 years ago, Te Puni Kōkiri produced a guide, Hauora o te Tinana me ōna Tikanga: a guide for the removal, retention, return and disposal of Māori body parts, organ donation and post mortem: Māori and their whānau. In the course of its investigation, the reference group was told of one instance where body parts had been retained in a hospital. It appears that the Māori health services consultant had discovered a freezer full of body parts, all of them labelled with tags identifying the owners as Māori. Despite the ire of medical specialists, the consultant set about advising iwi and notifying the owners, nearly all of whom were extremely angry. They could not understand how the clear instructions they left with clinicians had been overturned. The Māori health consultant bore the full extent of their wrath.
This case illustrates at many levels the range of contradictory and complex reactions that come with issues at the core of this bill. It demonstrates the deterioration of the relationship between Māori and the health system, and the lack of trust or confidence that their cultural beliefs would be respected. It illustrates also the reluctance of officials to actually respect what Māori had to say about such a sensitive and sacred area. It revealed a distinct lack of accountability amongst medical professionals to their clients, and it displayed the levels of discomfort Māori staff are exposed to when attempting to remedy cultural errors. All this was on top of the utter offence that was caused in the first place by the discovery of body parts “banked” by the hospital without any acknowledgment of the distress this would cause the families involved.
Human tissue and organ transplantation has become an effective way of treating serious health conditions such as heart disease, and kidney or liver failure. We in the Māori Party do not underestimate the critical importance of advancing any knowledge we can to counter the rise in chronic disease and chronic medical conditions. At the hub of this issue is the fact that transplantation usually depends on donations from people who have died in crisis, most often as a result of brain damage through stroke, or accidents. Culturally, the importance of being buried whole is absolutely central to this discussion. Concepts such as whakapapa, mauri, ira tangata, tapu, and noa are significant in our world view, as is informed consent, ensuring that information we have about organ donation is relevant and meaningful. What I continue to learn is that, for some, nothing is sacred.
Informed consent is not an individual prerogative. The application and use of human tissue requires the recognition of both individuals and collectives in the consent process. It was on this basis that we in the Māori Party brought a range of amendments to the bill, to ensure that the collective involvement of whānau was provided for in the provisions of the legislation, and we thank the Greens for their support. The amendments we produced would have enabled an overriding objection to the collection or use of that tissue to be raised by a member and on behalf of that individual’s whānau or extended family. The effect would have been that the collection or use of the tissue was prohibited. In our world view, allowing individuals to be the sole decision-makers regarding whakapapa material is entirely contrary to our tikanga and the preference for collective involvement. Although the bill does include some consideration of the wishes of the immediate family, it is by no means sufficient to accommodate the views of whānau decision-making processes.
Tangata whenua evidence was once again ignored. Dr Jessica Hutchings, the resident scholar at Te Mata o Te Tau, in Massey University, has undertaken research in the area of genetic and nanotechnologies that confronts the critical issues around the cultural, ethical, and spiritual implications of the collection and use of human tissue. It was her analysis that the issue of informed consent is critical. She has asked the question as to whether our current health system is capable of responding appropriately and sufficiently to issues of protection, informed consent, Māori control of information and medical processes, and access to information and medical care. Dr Marewa Glover from the faculty of medical and health sciences at the University of Auckland raised the concern also that Māori have not had the opportunity as whānau, hapū, and iwi to hui and discuss this matter. Her challenge to Parliament was that Māori need to be engaged in a real way. Having a few Māori on a committee or writing submissions is not good enough to constitute proper engagement. Māori need good information and relevant statistics in order to discuss and make decisions of such importance.
I go back to that awful example of the freezer of tagged body parts. We believe that it is an entirely reasonable expectation that in any laws or practices involving human remains, one would acknowledge the world views of tangata whenua as the indigenous peoples of this land. In doing so, we believe that in a tikanga context, any issues relating to human body parts should be included in a discussion that enables the collective wishes of the whānau to be taken into account alongside those of an individual.
I want to pay particular tribute to the chair of the Health Committee, Sue Kedgley, for her commitment to really try to facilitate discussions at the table that recognised the complexities of the cultural context for the legislative agenda related to human tissue. I acknowledge also the legal advisers inside and outside of Parliament who worked hard to put forward options to widen the lens to enable whānau to be able to decide the fate of the bodies of their loved ones upon death. We came to this bill as we do to every bill—determined that all legislation can and indeed should recognise tikanga Māori as was anticipated in the signing of Te Tiriti o Waitangi. But ultimately we were disappointed in the failure of the bill to recognise important cultural values and beliefs outside of a pre-imposed, predetermined Western framework of individual rights. Is it not time for Western values and beliefs to sit alongside those of tangata whenua when making these decisions, not compromising either?
No doubt this bill will pass, despite our lone opposition to it. Parliament has missed out on an important opportunity to open up the consent process to recognise indigenous world views, and that is a weakness. The discussions that need to be had around the protection and preservation of whakapapa materials have not been provided for by this legislation, and that is a pity. I have to wonder how we will stimulate education and debate to face the challenge of the critical need to give life alongside our tikanga.
What will be different? Tangata whenua will know that we in the Māori Party argued passionately and proactively for solutions that could ensure Māori were informed and included in the wider debate around human tissue, organ donation, and quality health-care, access, and choices. We support live donations of organs between whānau members, and we have discussed this matter in our constituency. We have been extremely challenged by this bill, and the life and death choices that are being debated before the House. Our vote of confidence must always be a vote for whānau decision-making, a vote for whānau rangatiratanga, and a vote for the safeguarding of whakapapa. We will not be supporting this bill.
JUDY TURNER (Deputy Leader—United Future) Link to this
I rise on behalf of United Future to speak in support of the third reading of the Human Tissue Bill, and like others who have spoken before, I reflect on the fact that New Zealand, like a lot of other countries, does not have a particularly high organ donor rate, and that the challenges that that provides us as a nation are not easily solved. My background with this issue goes back to the last parliamentary term when I was on the Health Committee. We had some interesting contact with people like Andy Tookey, who was a long-time campaigner for asking Parliament to find some way to improve donation rates in this country. What I remember most clearly was our discussion with medical staff who work at the coalface of this issue, on wards where people on life-support machines have been declared brain-dead, and therefore the machine will be turned off. It is at that moment, during that window of opportunity, that an approach can be made to a family to see whether there is any openness to organ donation. We were told by the medical staff that we can write whatever we like into law, but they will not remove organs from a body if the family objects, because the reality that they deal with is such that they will not comply. So whatever we feel and believe about the need for improved donor rates, we have to live with the reality of what is achievable and possible. However, I still feel that we must not drop the ball on this matter.
United Future believes that we must continue to think laterally and creatively around what possibilities we may not have yet explored for improving donor rates within New Zealand. What occurs to me at this stage—and I have thought about it over a considerable period of time—is that the obvious point, or crux of the matter, is the hearts and minds of family members at what is a very traumatic time in that family’s life. They are the people who decide, and even if they know that their family member was keen to be a donor, the pressures and emotional turmoil they are facing at that time can cloud the issue. This is a stone that I believe has not been fully turned over and explored yet.
I agree with others that the fact that we have this silly donor provision on our driver’s licence is a complete nonsense. When we sign up for a driver’s licence we want a driver’s licence; we are not thinking about donations. When the question is put to us at that point we make a kind of snap and fairly thoughtless decision one way or another. It is a bit of a blunt instrument and it means nothing. But it occurred to me that we have one other activity in New Zealand, which is in the area of blood donation, whereby when people go and become a blood donor they are in donation mode—that is what they are there for, and that is what they are considering. I think that we miss an opportunity in those circumstances. We have people who sit in a waiting room, have a blood test, lie down and give blood for 10 minutes or so, then sit and have a cup of tea and a biscuit. People can be in the centre for at least half an hour, sometimes even longer, in donor mode, and we do not seem to take what I think is a really respectful opportunity to discuss with people—who are obviously open to making a donation of human tissue—what the options are, and what the ethical issues are, around being a donor, should that sort of tragedy hit them. It occurs to me that that would provide a better opportunity to sign up people or to engage with them on this matter.
I am not completely convinced yet that a register would do anything, and that is certainly what the medical staff said to us. They said that we could write diddly-squat in a book but they will not take any notice of it when they are dealing with hard family emotions. But what we could do is provide people who express a willingness to be an organ donor, at that point, with material to give to their family in advance, prior to any tragedy being even a possibility. That can help them engage with their family and have a discussion that could be helpful in the midst of a tragedy when people are making all-important decisions. I have to believe that there is a big difference between somebody ticking a box on a driver’s licence application and saying that he or she is happy to be a donor, and a person who has sat down with his or her family and explained and articulated his or her wishes, the reasons why, and any reservations he or she may have.
One of the things we learnt is that people who want to be donors may be happy to donate an internal part of their body but they may have a hang-up about donating eyes, retinas, or things like that. They may find eyes a very sacred thing, but there may be other parts of their body that they would happily be a donor of. If people have the ability to sit down and think through those issues with their family and talk about it, in a moment of tragedy there may be an increased willingness by the family to think about that discussion and make that call.
I suggest to the House that we have not thoroughly examined every opportunity yet. My suggestion may not work, either, but I do think there are other options. I think that particularly in relation to cultural matters and the issues that the Māori Party has sought to address—which I think are very, very real—individual families, iwi, and extended families would love the opportunity to sit down and talk through what their response might be ahead of time. Whether that would make a difference at the end of the day, who knows—I cannot make that call even for my own family. But certainly since the last parliamentary term and the petition by Andrew Tookey, I have sat down with my family and clearly articulated to them my wishes should anything happen, and I have clearly articulated to them my reasons behind them. We ended up having an extremely good discussion whereby they went away and thought about their wishes and we talked about it as a family. There were differing views and positions within our own immediate family, but we came out of the discussion with a really clear understanding of what we would like to happen in our family. I do not how we would react if a crisis ever befell us—and God forbid that it ever should—because we can never predict how we would react in those circumstances or in the situation in which we find ourselves, but I do know that the fact that we have had this discussion will be a helpful thing.
I wonder how it is that we as a nation, and the Government, could help to facilitate those kinds of discussions in families and in other appropriate circumstances where it really could make a difference. I suggest that blood donors would be a good place to start because we are dealing with people who are already willing to make donations of this kind. I think it would be a wasted opportunity to not start there. I do not think that people would feel at all imposed upon in those circumstances, because they are already there making a donation.
United Future is happy to support this bill. We are glad there are some provisions in it that keep the discussion open around organ donation, but we think a lot more could be discussed and that a greater range of options could be considered.
SUE MORONEY (Labour) Link to this
I welcome the opportunity to speak on the third reading of the Human Tissue Bill as I was on the Health Committee at the time when submissions were heard on this bill. I know that members opposite are interested to hear from members of the select committee about how those submissions proceeded. This was a difficult bill for the select committee members to hear. I thank the members of the select committee and the chair, Sue Kedgley, who spoke before, because we were dealing with issues about untimely deaths, deaths that families were not prepared for, and there were some quite difficult discussions that went on around that issue.
I take the opportunity, while I am on my feet, to pay my respects to our Waikato firefighter Derek Lovell in the event of his untimely death. I also pay my respects to his family, his wife Milli and his daughter Tiffany, who I have visited. Our thoughts go out to those people in the event of that untimely death.
In the select committee we heard many such tragic tales of personal circumstances that people had found themselves in. We thought about the trauma they had gone through and considered the issue of organ donation and what that meant for them. We also had some submissions from families who had found themselves in that position and did not contemplate the issue of organ donation as it had never been raised with them. They were there to say to the select committee that as difficult as it would have been for them at the time, they wished there had been quite a standard process whereby they had been asked to consider the issue. So we did hear submissions from all aspects.
There were quite a number of aspects to this bill. People have spoken about the organ donation issue substantially in the course of this third reading debate, probably because that was the one that really touched our hearts the most, I suspect, and because it was very controversial. However, there are many controversial aspects to this bill. It covers how to deal with human tissue with regard to research and education, and it also deals with a range of other very sensitive issues. I want to speak to a couple of those issues today.
We heard from previous speakers that the bill as first introduced to the House had a number of significant amendments recommended to it by the select committee. Two of the more technical amendments concerned foetal tissue and the collection and use of gametes and embryos. I alert the House to the fact that although organ donation is controversial and emotive, we had several other equally controversial and emotive issues to deal with. I want to briefly outline those two important amendments today.
With regard to foetal tissue, the amendment recommended by the select committee clarified the consent process for use of human tissue from dead foetuses. Although the Human Tissue Act 1964 specifically excludes stillborn children from the definition of “body”, the Human Tissue Bill includes dead foetuses and stillborn children as a specific type of foetus, thereby ensuring that situations not covered by the Code of Health and Disability Consumers’ Rights are in fact covered by the consent framework in this bill.
Foetal tissue that is removed or obtained in the course of a health care procedure is covered by the code and not by the Human Tissue Bill. This includes foetal tissue removed as a result of termination or stillborn children delivered with the assistance of a health practitioner. In these situations the foetal tissue is treated as a body part of the mother, and the mother would have the right to make an informed choice about the use of that tissue.
Having described that, I imagine that listeners to this debate can well understand the range of emotive issues and very tricky situations that the select committee considered. We were helped in the course of our deliberations by the officials, who were able to talk to us about the technical realities of the decisions we were making as a select committee.
The Human Tissue Bill covers foetal tissue that is not removed or obtained in the course of a health care procedure. So the consent framework applies to foetal tissue that is inside the body of a dead mother; to foetal tissue that has issued from the mother but not in the course of a health care procedure, for example through a miscarriage or birth of a stillborn child without assistance from a health practitioner; and to foetal tissue where the mother gave consent to collection and use of tissue under the code and where the mother has since died and someone wants to use the tissue for a purpose not covered by the original consent. Although there will be few situations where the bill rather than the code will apply, it is important that the bill makes clear who can consent in these situations. The new clause does just that.
The second important amendment that I want to outline to the House today is with regard to the collection and use of gametes and embryos. This second amendment ensures that the collection and use of gametes and embryos from dead people is covered by the Human Assisted Reproductive Technology Act—known as the HART Act—which was passed in 2004. This bill amends that Act to provide for regulations requiring informed consent for the collection of gametes and embryos from dead people for reproductive procedures, reproductive research, or other lawful purposes. The specific form or content of the regulations will reflect the outcome of the consultation process currently being led by the Advisory Committee on Assisted Reproductive Technology. This is a sensible approach. The consent framework in the Human Assisted Reproductive Technology Act, which requires consent of the individual, is more appropriate than the consent framework in this bill, which allows consent to be given by various people other than the individual concerned.
I return briefly to the issue of organ donation, which has been well canvassed in the course of this debate. There has been some discussion about drivers’ licences and whether they are the appropriate place for an individual to indicate willingness to donate. I would argue, outside the scope of this bill, that as an educative process it is actually very useful for people when being issued their drivers’ licences to think carefully about the issue of organ donation. I think the choice whether to indicate willingness to donate causes people to think seriously about the responsibility that comes with having a driver’s licence issued to them. It raises that prospect of the thing that we never like to think about—that is, an unexpected or untimely death. I think it is quite appropriate in the issuing of drivers’ licences that people do stop and reflect on the responsibility that has been handed to them when they take up a driver’s licence and get out on our roads.
Of course, we know that road accidents are a major cause of unexpected and untimely deaths, so I think it is appropriate that people are called to think about that with regard to that process. However, members have quite rightly put before this House today in this debate that the option of indicating willingness to donate on drivers’ licences has not resolved the issues about the consenting that goes with that. It is not a legally binding document and it does not give effect as people had perhaps, in a misguided way, thought it would when they made that decision and stated a willingness to donate on their drivers’ licences. I think it is entirely appropriate that in addition to that process the consent processes are spelt out now in this bill. I commend this bill to the House.
Dr JONATHAN COLEMAN (National—Northcote) Link to this
I will take just a brief call on this Human Tissue Bill. I think the issues have been well canvassed. As members know, National will be supporting the bill. I note, though, that there would have been a great opportunity for an organ donor register to be established. I know that this bill has provision for that to happen in the future, but I listened with interest to the arguments saying that we cannot establish an organ donor register because there is no evidence that it will be effective. The very people who are making that argument will want to regulate through the Public Health Bill for fairly Draconian measures for which there is no evidence either. So there seems to be a fairly inconsistent approach there. I think maybe the Green Party and some members of the Labour Party need to look carefully at the issue of evidence to be considered before a measure is instituted.
This bill updates the previous legislation so that the cultural needs and beliefs of our nation as we are in the 21st century are taken into account. We think that is a very good thing. The committee heard a range of submissions. There were some very compelling stories, and certainly this bill was the most intellectually challenging that the Health Committee has been confronted with.
The bill involved a great deal of questioning and reading, but it is good that this legislation is coming to pass and that the House will be passing it today. My only regret is that it would have been a great opportunity for the establishment of a donor register, but the door is open and I am sure a future Parliament will be called upon to consider the issue, again. Those are my concluding comments, and it is good this bill will be passed today.
Hon STEVE CHADWICK (Associate Minister of Health) Link to this
I am pleased to come down to the Chamber to take a call on this Human Tissue Bill. It has a very interesting history. It began with a Law Commission report that prompted us about ways forward to care for human tissue. I acknowledge that we started it off really with Jackie Blue’s Organ Donation Bill, which was discharged, and then this Human Tissue Bill came into being. The Human Tissue Act is 44 years out of date and this bill is really needed today.
I think we have become a little bit confused about some of the issues that we all find to be very, very sensitive. In the past, I used to be in charge of a service that linked very closely with intensive care and intensivists, the collection of organs for organ donation, and Auckland hospital. Never were the wishes of family overridden. But we were lucky; we were in a hospital that set up an environment that encouraged cultural participation, with Te Whakaruruhau and the Hunga Manaaki Service walking alongside families. I knew the sensitivity of these issues and how that ought to be reflected in a bill. It was interesting when I was pursuing a member’s bill and went up to Auckland to talk over these issues with the intensivists and found that they were really aware that those issues could be addressed through the training and cultural awareness of all staff who need to deal with the retrieval and management of human tissue. I believe that this bill is really just setting up the framework for regulating the collection, storage, and use of human tissue, and any health provider involved in this aspect of medical care, which is a very sensitive one, really needs to be well educated on the cultural issues. I remind the House too that those cultural issues are not the exclusive domain of Māori; they are also issues for Pākehā, Indian, or anybody when they are dealing with the care of the deceased and the retrieval of organs from the deceased. I want to cover off here that that is primarily what this bill is about.
Organ Donation New Zealand is well established, and it is run from Auckland. It looks after the retrieval of organs right throughout New Zealand, and it is absolutely adamant that its role is about education and raising the community’s awareness. Although I know it is a sensitive issue for many families, hopefully they will look at issues like the advanced directive or what the will of parents and family are, if they were to meet with an untimely death. My family knows exactly what to do with my human tissue, and what I would want to see if there was anything useful left there to use. It is an open discussion in our family. We are a bicultural family yet it is not an issue that has really spooked us, at all. We have had the open discussions, and I know how my family will look after my remains if something happened to me. Many families in the hospital setting, when somebody comes and walks beside the family and explains, along with clinicians, about the intention and the purpose for human tissue retrieval, and when they get time to reflect, and are not pressured, are usually quite happy to make a decision. No intensivists will move, unless that environment has been set up for families. Those are the issues that intensivists take notice of. Intensivists told me, as they told Judy Turner, that they would never look at the motor vehicle licence and whether the person had ticked the donor box. Just because someone has signed the motor vehicle licence to say that he or she would like to be a human tissue donor, it is not going to cloud their decisions on diving in to retrieve organs. I understand their reasons for not doing that. They want to provide the right clinical environment, which supports families to make the right decision on behalf of their deceased loved ones.
One of the underlying principles that I like about the Human Tissue Bill is that of informed consent. I believe we have to have a clinical environment in which we trust clinicians to deal sensitively with patients to bring out the issue with wider family about what informed consent really means. That means covering off how the tissue will be stored, how it is collected, and whether they can later have access to that tissue. I think New Zealand learnt a lot when we were all horrified by the infant hearts’ issue at Green Lane Hospital. We realised, absolutely, that there was no system around the collection and maintenance of those organs. That horrified us all.
We have come a long way since that Green Lane Hospital infant hearts’ issue. The public discussion around both Jackie Blue’s bill and this Human Tissue Bill, involving very, very complex issues, has been fantastic. We can now talk openly with families about what they think about this, what they feel comfortable with, and that is what is to be applauded. We now have that environment in the clinical setting, but we need more discussions out in the community.
This bill is consistent with the Code of Health and Disability Services Consumers’ Rights, which is a very important document in every clinical setting so that patients know their code of rights, and the bill does comply with that. I am pleased that my colleague Sue Moroney rounded off very carefully the issues that are dealt with in the Human Assisted Reproductive Technology Act, because they should not be confused with this bill.
This bill is very sound, and I congratulate the Health Committee under the chairpersonship of Sue Kedgley. It has come up with a very sensible option, and the bill will be very well received by New Zealanders.
NATHAN GUY (National) Link to this
I will take just a brief call on the Human Tissue Bill before us this evening. It is hugely important to this country, and National will be supporting it. National members on the Health Committee did a lot of good work on the original member’s bill brought in by Jackie Blue.
The reason this legislation is very important is that there is a shortage of vital organs for donation. It is pretty hard to talk about people’s inner anatomy in detail but basically there is a shortage of organs, particularly kidneys, livers, and hearts. When people have been in an accident and are fighting for their lives, we need to ensure there are enough of those vital organs available for them. When one reads through this bill, it appears there is a shortage of them, and, unfortunately, this bill also does not capture the organ donor register issue. It is a very, very topical issue and I think that in time Parliament will have to revisit it.
National will support the Human Tissue Bill because it is of vital importance. I acknowledge the hard work of the Health Committee. This bill is very complex. I have just had a read through of it and those listening may not realise that it comprises 70 pages. I believe that this Parliament will need to address the organ donor register. It is one of the most important parts that are missing from this bill, and that is a challenge going forward.