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Human Tissue Bill — Second Reading
[Advance Copy - Subject to minor change before inclusion in Bound Volume.]
Human Tissue Bill
Hon HARRY DUYNHOVEN (Minister for Transport Safety) on behalf of the Minister of Health: I move, That the Human Tissue Bill be now read a second time. The bill has been reported back from the Health Committee, which recommended that it be passed with amendment, and I would like to thank the committee for its careful consideration of the bill. I am sure there will be a few members listening who say that this is a very unusual bill for the Minister for Transport Safety to be involved in, and certainly it is, so I say at the outset that I am doing this reading tonight on behalf of the Hon Pete Hodgson, the Minister of Health.
But this bill is one that in the past I have had some interest in, in that on a driver’s licence, of course, one will see that the word “Donor” is, or is not, on that licence. I invite everyone to check their drivers’ licences right now. Members may take their licences out of their wallets, if they have them, and check them. Certainly, I am proud to say that as far as I am concerned, after I have gone they can use whatever bits of me they need to help prolong the life of anyone they might be useful to. But that leads to the particular matter before us.
The Human Tissue Bill was introduced in November last year to provide a framework for regulating the collection, storage, and use of human tissue—primarily, of course, tissue from deceased people. It also regulates trading in tissue, the export and import of tissue, and the use of tissue for non-therapeutic purposes—for example, research, education, audit, and anatomical examination. Once enacted, the Human Tissue Bill will repeal and replace the Human Tissue Act of 1964.
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 current legislation with “informed consent”, which is consistent with the Code of Health and Disability Services Consumers’ Rights. By specifying who may give consent for the collection and use of human tissue, the bill provides clarity for organ and tissue donation and the collection and retention of tissue at a post-mortem examination.
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, and an example is certain research where that research is approved by an ethics committee. The bill sets out who is able to give informed consent in four different circumstances: the collection and use of tissue from a deceased person for general purposes, including organ and tissue donation and research; the collection and use of tissue from a deceased person for anatomical examination or public display; the use of tissue that was collected from a living person for a secondary purpose after that person’s death; and the collection and use of tissue from a living person where the code does not apply and the analysis is for the purpose of obtaining genetic or other information about a particular condition or trait. The consent framework is slightly different for each of these situations, and I am pleased that the committee has recommended the inclusion of flow chart diagrams to aid understanding.
I will briefly describe the consent framework for the collection and use of human tissue from a deceased person for general purposes. In this case, the primary consent will be that of the deceased before he or she dies, or of someone nominated by the deceased person to consent on his or her behalf. In that absence of consent to donation by the individual, or by his or her nominee, the decision will be made by the immediate family. The bill provides for decision making by an available close relative of the dead individual if the immediate family is unable to reach a decision.
Since the bill’s introduction, the committee has heard from a diverse range of submitters, which has resulted in a number of improvements to the consent framework. One of the key amendments recommended by the committee is the introduction of “informed objection”. This amendment recognises the ability of decision makers to raise an informed objection alongside the ability to give informed consent. Both “informed consent” and “informed objection” will have legal standing, and will prevent others from consenting or objecting.
The committee also 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 their family does not agree with.
The second amendment requires the person collecting or using human tissue to take into account the cultural and spiritual needs, values, and beliefs of the immediate family. It is entirely appropriate for clinicians, researchers, and others who are collecting and using human tissue from a deceased individual to do so with proper recognition of, and respect for, the immediate family. A number of submitters noted the difficulty of enforcing the wishes of the individual if those were at odds with the wishes of the family.
Other situations where organ and tissue donation may not proceed, even though there is consent, include situations when the organ or tissue is unsuitable or there are no available recipients. The committee has recommended changes to make it clear that nothing in the bill requires any person to collect or use human tissue, and that a person who proposes to collect or use tissue may decide not to act on informed consent. It is appropriate 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. If individuals have not made a decision before their death, or nominated someone, then their immediate family may consent or object to the collection or use of their tissue.
The bill as introduced provided that the immediate family could not give consent unless a majority of the immediate family agreed with that decision. The committee has recommended that the need for a majority decision is removed. This amendment will mean 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 accept if consulted, that decision. This amendment will allow families to reach a decision in whatever way is appropriate to them, as long as they collectively agree with the decision.
The Human Tissue Bill has been reported back by the Health Committee, and the committee has recommended that it be passed with the amendments shown. Certainly, the issue of donors, in terms of organs for transplant, is one that has a great deal of emotion surrounding it. I commend the select committee for the thorough and sensitive way in which it approached this issue. There are many of us who, when we had our photo driver’s licences issued some years ago, opted to become organ donors. In other words, if we are unfortunate enough to lose our life in a crash on the road—or indeed in any other circumstance—our organs, we feel, may be used by whoever could make use of them. Surgeons would obviously have to assess their suitability, etc. We will all be aware of people whose lives have been extended or indeed saved by the ability to receive transplanted organs from other people.
I commend the bill to the House, to provide clarity on the consent required for the collection and use of human tissue for the public, clinicians, and others involved in the collection and use of tissue. I think it is a bill that the House will be most anxious to debate thoroughly, a bill with subject matter on which many people have very strong views, and a bill that I believe this Parliament should seriously consider. I commend the bill to the House.
Dr JACKIE BLUE (National) : The National Party will be supporting the second reading of the Government’s Human Tissue Bill, although we remain concerned that an organ and tissue donor register is on hold for the moment.
First, I would like to make some general comments about the bill. The Human Tissue Bill provides a consent framework within which the individual’s wishes, if they meet the definition of informed consent, are given primacy. The National Party absolutely supports this intention. This is the basis to the Code of Health and Disability Services Consumers’ Rights, which was launched in 1996 by former National MP the Hon Katherine O’Regan when she was Associate Minister of Health. I would like to take the opportunity to wish Katherine a speedy recovery.
The establishment of the code of rights came out of the recommendations of the cervical cancer inquiry in 1988, which was a turning point in our health system. Specifically, the code talks about an individual’s right to be fully informed, and the right to make an informed choice and to give informed consent. The difference is that although the Human Tissue Bill predominantly regulates the collection of tissue from dead human bodies, the code is about living people. None the less, the basic principle that an individual’s informed consent has primacy in both this bill and the code is absolutely appropriate.
This bill replaces the Human Tissue Act 1964. It is a complex bill and raises many complex issues. It has raised the issue of the cultural context of informed consent. Researchers were very concerned about how the bill would affect established cell lines where the original donor was untraceable. They were concerned that if established cell lines were included, research would grind to a halt. We also heard from a private company that collects cord blood from newborn babies to store that it could go out of business if it paid a fee for the blood to be collected. These and other issues had to be considered.
Apart from our concerns about an organ donor register, the National Party was reassured that the Human Tissue Bill in its latest form had no loopholes or unforeseen, unintended consequences. It regulates the collection and use of tissue, primarily from deceased people, for non-therapeutic use such as for education, research, and audit, and the use of cadavers in medical schools. It regulates trading in tissue—export and import. It regulates schools of anatomy, closes gaps in current regulations for the use of tissue for living people, and allows for the provision of an opt-on organ donation register.
The Government’s Human Tissue Bill was heard alongside my member’s bill, the Human Tissue (Organ Donation) Amendment Bill. Andy Tookey was the driving force behind my member’s bill. Andy has been a tireless campaigner, highlighting the issue of falling organ donation rates and the need for a register. The member’s bill provided details on how an organ donation register could work. The way the Government bill was drafted was that if during the Health Committee process it was clear that the organ donation register was needed, then the member’s bill could easily have been cut and pasted into the Government bill. Sadly, this was not to be. Even now it seems incomprehensible that this will not happen.
There have been two previous Health Committee reports—in 2002 and 2003—both calling for the establishment of an organ donor register. The Labour Party, as part of its 2005 election manifesto, said it would establish an organ donor register. We have seen our organ donor rates drop from the high 30s in 2001-04, to 29 in 2005, and to just 25 in 2006. We face the situation whereby the threshold to go on a waiting list has been lowered, which means there are more and more people waiting for a transplant. Organ transplantation is now an option for more illnesses. We face an obesity and diabetes epidemic. Some of the complications of diabetes are end-stage renal failure, chronic ill-health, and a life dependent on dialysis. There are reports of around 200,000 people being infected with hepatitis B or C. Liver failure is a complication of these illnesses, and those suffering from liver failure face certain death without a liver transplant.
It seems inconceivable that faced with such huge need and demand for organs, the backing of the Government, and two previous Health Committee reports, we should not be proceeding with an organ donor register immediately. However, we were told there was no international evidence for a register. This is despite a steady stream of media reports I have seen of countries turning to legislation to improve donor rates, establishing new organ donor registers, or going from intent registers to consent registers. These have all been done as a response to falling organ donor rates, in the face of increasing need. In January 2006 the Australian Capital Territory issued a press release stating that their impressive increase in organ donations confirmed the importance of registering with the Australian programme. In September 2006 the UK Human Tissue Act came into effect to ensure that if a person registers his or her wish to donate organs, then that takes precedence over objections. In April 2007 Texans expanded their organ register into an online register. In the same month a Canadian media report called for the establishment of a national database and network, in the face of falling donations. In July 2007 there was a media report from Switzerland that they were establishing an organ donor register. In August 2007 Ontario reported that they would be establishing a register to replace what they called a “completely ineffective donor card system”.
I would like to make some comments about donor card systems, because without an organ donor register, in essence that is what New Zealanders will have to depend on. In other words, without an organ donor register, New Zealanders will have no other option but to carry around advanced directives or have instructions in their will. The Ontario experience is that when there is a sudden illness or accident, the last thing medical staff and family members worry about is their purses and wallets, which often get locked up. There are numerous examples of countries or states in the USA taking up registers, yet New Zealand is backing off. Where does that leave New Zealanders? The answer is, with not much at all. We are in a watch-and-wait situation.
There is provision in the Government’s Human Tissue Bill for a future Government to bring in an organ donor register by regulation, if one is deemed necessary in the future. We were told that a public information campaign would be crucial to an overall strategy to increase organ donor rates, but there was no information or detail about how a public relations campaign might work. Without a register, the call to action of a public information programme will be diluted and lost. A register would provide a crucial focus to a public relations campaign. A register would provide an informed consent process, which is fundamental to this bill. The register is the key. We have no register and no evidence of a public information campaign, and we are facing huge need and demand for organs. The focus will now be on Organ Donation New Zealand, which is the publicly funded body for retrieving organs for donation, to prove that a register will not be needed in the future and that it will be able to lift our organ donor rates. My very great concern is that it will not be able to do it alone and that we will be delaying the inevitable and wasting precious time. In summary, National will be supporting the second reading of the Human Tissue Bill, but we remain very concerned that an organ donor register is not forthcoming at the present time.
SUE MORONEY (Labour) : I thank the Minister Harry Duynhoven for his introduction of this important bill. As a member of the Health Committee that heard the submissions on the Human Tissue Bill, it is a great pleasure to be able to participate in the debate on its second reading this evening. The select committee had several complex issues to deal with in relation to this bill. It was certainly one of those bills whereby the more we looked into the detail of it the more complex the issues became. Of course, it was incumbent upon the select committee—as it is with all legislation, but in particular with this bill—to treat all of the issues with great sensitivity. I believe that the select committee was able to do that right across the board, with all parties.
The select committee was able to fully canvass the issues, seek as much advice and detail as we needed from officials, and talk through the range of very complex issues that comes with dealing with human tissue and its use, and also with organ donation, which Jackie Blue has just finished speaking about. I do, though, want to comment on the issue of an organ donation register. There has been some quite misleading commentary on the Health Committee’s position.
It is not the position of the Health Committee to say no to an organ donation register; in fact, the framework has been set up and the option left open for that very thing to occur. I wanted to take the opportunity to clarify that. Also, in response to the previous member’s speech on this issue, I was surprised to see that the National members on the select committee did not vote in support Jackie Blue’s organ donation bill, that it was unanimously voted against by the select committee, and that the select committee’s view was to proceed with the Human Tissue Bill, which I will now speak to.
I intend to tell the House a bit more about the wider policy background that led up to the bill’s introduction. The policy behind the bill was informed by a review, and that review 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 the use of tissue. The Minister Harry Duynhoven has discussed how those concerns have been addressed in the bill and the amendments that have been recommended by the committee.
That review also highlighted issues relating to the regulation of the non-therapeutic use of human tissue—the import and the export of tissue and trading, which until now has not been adequately addressed in our current legislative framework. 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 reasons for such a standard were the need for clarity and consistency, and to allow for monitoring of the processes around tissue use.
This bill will ensure the safety and quality of the non-therapeutic use of human tissue through standards being prescribed or approved by regulations. These standards will apply to the collection and the use of tissue for research, education, audit, diagnosis, post-mortems, anatomical examination, and other non-therapeutic purposes. So it is very comprehensive. The bill also contains additional requirements for schools of anatomy, including the licensing of those schools, given the invasive nature of the anatomical examination and the absolute need for public confidence in those processes.
The ministry 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, for peer review, and for diagnostic 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 the import of tissue. These currently do not exist. These provisions will enable more stringent informed consent requirements for particular types of tissue—for example, human embryonic stem cell lines. The Health Committee took a particular amount of time to address this issue, because of all the factors that surround the very emotive and moral issues relating to the use of human embryonic stem cell lines, particularly with regard to their import or potential export.
The ministry review found general support for a prohibition on the sale and purchase of human tissue. I want to clarify that point, because it was important for select committee members to absolutely get clarity in their minds around this issue. There is general support for a prohibition on the sale and purchase of human tissue, but there is an acknowledgment that there should be some allowance made for the recovery of reasonable administrative costs associated with the collection, analysis, and processing of such tissue. The select committee needed to consider this issue very carefully, because, of course, there is quite a fine line between the costs associated with the recovery of reasonable administrative costs associated with the collection of such tissue, and any suggestion that there might be reward or financial gain for the collection of such tissue.
The bill repeals Part 3A of the Health Act 1956, which regulates trading in blood and controlled human substances, and it replaces it with similar but extended provisions covering, for example, trading in all human tissue. The sale and purchase of human tissue, including blood, will, as a general rule, be prohibited, and that is the point I wished to clarify earlier. I want to make sure that anyone listening to this debate is absolutely clear on this point: under this bill the sale and purchase of human tissue, including blood, will, as a general rule, be prohibited.
In further clarifying the media reports that I referred to when I started my speech on the second reading debate on the bill, I made a comment about the select committee’s findings on the need or otherwise of an organ and tissue donor register. I will read specifically what the select committee’s findings were, because, as I said before, there have been some quite misleading media reports in this regard. This is what the select committee found: “We were informed that there is as yet no compelling evidence that an organ and tissue donor register increases the overall rate of organ and tissue donation. Nevertheless, some of us feel that a register would be useful as a focus for informing and educating the public and thus promoting organ and tissue donation. Others feel that the cost of establishing a register could be better used to fund a direct information campaign.”
It is interesting to pause and reflect on that particular statement from the select committee, because we often hear from the Opposition benches that those members are in favour of reduced Government spending where they do not feel that there is a demonstrated need or sufficient evidence to pursue some of the issues that the Government wishes to pursue. That is of particular relevance when we address this issue, because the select committee found that there was not enough compelling evidence to support the cost of establishing such a register at this point. So the majority of the committee did not recommend establishing a register at present. But, most importantly, it recommended including a clause that permits the establishment of an opt-on register, by regulation, at a later date. That is the very point that I think has been glossed over by some of the media reports.
This select committee has gone about recommending that a framework be put in place so that such a register can actually be brought into place at a later date, where the evidence shows us that it would have the outcome of increasing organ donation rates. The issue of increasing organ donation rates was very much in the minds of the select committee members when we heard submissions on this bill.
I thank the submitters who came forward. Many of them had very personal and very heart-wrenching stories to tell about their experiences of dealing with the untimely, unexpected deaths of loved ones, and the way in which they had to make some decisions, or not. Some submitters were there to tell us that they would have liked to have the opportunity to make such a decision about organ donation, but in that moment of grief the issue was not put before them. Certainly, some of those submitters were there to tell us that they would like the medical profession to put those issues before them so that they can make those decisions. In conclusion, I commend the bill to the House.
BARBARA STEWART (NZ First) : On behalf of New Zealand First, I rise to support the second reading of the Human Tissue Bill. As a member of the Health Committee, I acknowledge the work that the officials put into this bill. The process was very complex, and their advice was very, very thoroughly researched. We believe that it benefited us and allowed us to make relevant changes to the bill.
The select committee members worked very diligently on the bill. We were very aware of the important research that has been carried out by the universities and the many other research institutions that are involved in this area, and we did not want to hinder any of this vitally important research.
The bill is important. The commentary on the bill states: “The bill regulates the collection and use of tissue from dead human bodies and sets up a framework for informed consent for tissue use.” The bill is comprehensive and quite complex, but it provides clarity on informed consent and informed objection. In the schedules of the bill there are actually flow charts. This is one of the first bills I have ever seen that contains flow charts, but we believe that they provide clarity and that they help to show the intent of the bill.
The bill also allows for the setting up of an organ donor register, if at some time in the future there is sufficient evidence to establish an opt-on register. Of course, this provision links with Jackie Blue’s bill in which the focus was on the mandatory establishment of an opt-on register. The data the select committee received from overseas countries regarding the establishment of an organ donor register does not show at this point in time that setting up an organ donor register actually ensures that increased numbers of people donate organs and tissue.
New Zealand First, like other parties in this House, believes that an extensive public marketing campaign is required, if an opt-on register were to be successful. Without that campaign, organ donation will always remain in the too-hard basket. Basically, there has been no action at all on this front since 2004, when the Health Committee recommended that a legally binding register should be set up here in New Zealand. We are very aware that the register and any public information campaign need to go hand in hand, as the bottom line is that any register that is set up cannot afford to fail.
At this point in time the rates of organ donation are very low; there were just 25 donors last year. But increasing numbers of people are waiting for organ transplants. We are only too aware of this situation. This House is very aware too that the land transport database of organ and tissue donors does not work. It makes one question why the organ donor option has to be indicated on a driver’s licence, if it is of such little value. More discussion is needed when a person ticks the relevant boxes on the driver’s licence form, whether with his or her family or in some other way, but it needs to happen.
I remind the House that the tick on a driver’s licence is only an indication of a person’s wishes; it is not legal consent for donation. I think many people believe it to be so. That tick has often left grieving families unsure about what to do, so usually nothing is done. The donation of organs can be an extremely controversial decision for families at a very stressful time in their lives. The select committee tried very hard to clarify the consent process that is required—hence the flow charts. We thank the many submitters who came forward with some very sad stories to tell.
New Zealand First believes that the bill should provide informed consent requirements that must be met before tissue collection or use. This issue is not going to go away. It has not been addressed, at this point in time, to the satisfaction of all New Zealanders. However, I need to remind people—like the previous speaker—that the potential is there in this legislation to develop an opt-on register at some later stage.
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 his or her own tissue, or tissue from a body that the person is responsible for. That is prohibited, as it always has been. The last thing that most New Zealanders would want to occur is financial consideration for human tissue or organs. We believe that the gift status that these donations have been accorded must remain.
It was very interesting to hear, over the course of the select committee process, that a few submitters believe there should be mandatory harvesting of organs, once a person has died, because the person would not need them any more. The submitters believe that that would save the health system millions of dollars, as people would not need expensive treatments, or the medications that are required, while they are waiting for a donor. It is a very interesting concept, but it is far beyond the scope of this bill at present.
This bill outlines the other requirements for, and restrictions on, the collection and use of human tissue. It is cross-referenced to a number of other bills, such as the Coroners Act, Human Assisted Reproductive Technology Act, Health Act 1956, and Commerce Act. So there has been quite a comprehensive review of all that legislation, as well.
New Zealand First believes that this bill clearly sets out the processes that need to be followed for the collection and use of tissue from dead human bodies, and sets up the framework for informed consent for human tissue use. We look forward to further discussion of this bill at the Committee stage and to hearing the views of the other parties as we debate the various clauses. In conclusion, New Zealand First supports this bill.
TARIANA TURIA (Co-Leader—Māori Party) : Tēnā koe, Madam Assistant Speaker. Tēnā tātou katoa. As we in the Health Committee were completing our analysis of the Human Tissue Bill, I came across an interesting article by Dr Jean Hera of Palmerston North, who was questioning the way society deals with death. She said: “Watching over and caring for our dead, as is the Māori custom, is also our culture and we need go back less than a hundred years to discover this.” Dr Jean Hera is Pākehā, and the traditions she talks of are the traditions of Pākehā culture. She said: “It isn’t well recognised that the present mainstream Pākehā experience that sees death treated with detachment and hidden away as much as possible, is not our death culture as Pākehā.” She said it had been a recent intervention.
The Human Tissue Bill has been one of those rare opportunities before the Parliament where the traditions and practices of our cultures, such as in the processes around death and dying, have been at the forefront of our discussions. I want to mihi to Sue Kedgley, and, indeed, the Health Committee, for the generosity of time to explore the issues central to Te Ao Māori. Any bill that deals with the collection and use of human tissue from dead bodies was bound to evoke strong responses from Māori—and, indeed, from myself—because the processes around the collection or use of human tissue we have always seen as being in the realm of whānau, hapū, and iwi decision-making. As such, we in the Māori Party have been fully alert to the concerns and fears that would be raised by the whānau of the deceased at the time of decision making, and these decisions are cradled in a context defined by whakapapa—a context in which the philosophies of mauri, wairua, and tikanga are sacrosanct.
For explanation of this context, a paper that Dr Paratene Ngata wrote for the New Zealand Medical Journal in 1995 is still relevant to this debate. Dr Ngata was addressing the context around death and dying from a Māori perspective: “Death and dying, like giving birth and living, are considered natural and normal processes like breathing, eating, sleeping and creating life. Death is also a transitional process—from Te Ao Marama (the world of light) to Te Ao Pouri (the world of darkness), a normal part of the life cycle.” He said also: “And while contemporary Māori attitudes and beliefs have been significantly influenced by the Christian doctrine, any attempt to intervene in any natural and biological process—like Tane’s struggle to conquer death—would generally meet with antagonism, disapproval and vigorous opposition.” Dr Ngata did go further to suggest that any changes to this process must, as a priority, involve the collective wishes of whānau and hapū. As he concluded, “consultation with, and participation of, iwi Māori in the debate is essential”.
The tension between the “antagonism, disapproval and vigorous opposition” and the collection and use of human tissue could be addressed only, in my view, through the effective participation and involvement of whānau and hapū in the debate. I concur with the views of Dr Mārewa Glover from the faculty of medical and health sciences at the University of Auckland who advised that having a few Māori on a committee, or writing submissions, is not enough to constitute proper consultation or engagement. Tangata whenua deserve to receive all of the relevant data and robust information in order to know what questions to ask, to be able to determine optimum outcomes to assess whether whānau or hapū will derive some benefit from the proposals. Despite our best intentions, the advocacy that came through at the select committee was insufficient to make the changes necessary to enable whānau decision-making to have the final say.
During the process of the bill the Māori Party worked with the Parliamentary Counsel Office and drafted amendments that were tabled before the Health Committee. The amendments were to enable an overriding objection to the collection or use of human tissue to be raised by a deceased person’s whānau, the effect of which would be to prohibit any collection or use. As the record shows, however, the committee voted down the amendments, with the consequent effect that wishes of the individual will prevail at all times and at all costs. And the cost is quite simply another piece of legislation that marginalises, ignores, and rides over the cultural imperatives provided by tikanga Māori.
We were interested that the Bioethics Council, Toi te Taiao, agreed, despite also privileging individual rights over whānau, that the bill does not provide adequate consideration or recognition of tikanga Māori. Its submission reminded us all that in Māori world view the body is considered tapu and therefore requires specific consideration and respect. It considered that the collection and use of human tissue for research may inadequately respect the cultural values of Māori as it currently appears in the bill, so they suggested that more kōrero and wānanga with tangata whenua is needed to discuss issues involved with organ donation.
Much the same concerns came forward from the Dunedin Community Law Centre. It supported the right of families to object to the use of human tissue, noting that once an individual has passed away, his or her needs should become secondary to those still living. This is very much the hub of the debate around death in a Māori world view. We see the deceased as belonging to his or her family, both through a genetic and cultural history, knowing that without our ancestors or our descendants we would not exist.
There was one other opinion that very powerfully put the case for initiatives and measures to ensure equitable access for Māori to receive organ transplants. Dr Jessica Hutchings, resident scholar of Te Mata o te Tau, Massey University, came from the perspective of Māori relationships with new technologies, such as genetic technologies and nanotechnologies. Her key point to the committee was the same as that raised by Dr Pat Ngata, that the issue of informed consent is critical. In a context that is driven by considering the impacts on and the implications of mauri, whakapapa, and ira tangata, and the states of tapu and noa of organs, she strongly advocated for the development of information for Māori audiences to be developed by Māori. We have raised the same two concerns—the call for whānau involvement and access to effective information—throughout every stage of the progress of this bill, but it appears to no avail.
The Māori Party cannot support this bill in its current form. Our people have spoken consistently and passionately that the use of human tissue requires the recognition of both individuals and collectives in the consent process. The bill in its current form denies the collective involvement of whānau by reducing the decision-level authority down to the cause of the individual. The bill appears to place greater emphasis on the rights of the individual and the closest members of the family than on the extended whānau. Although the bill does give some consideration to the wishes of the immediate family, the provisions remain insufficient to give whānau the ability to make an overriding objection. The Māori Party asked for an amendment to the informed consent provisions to include the words “informed consent” within a cultural context, which would have included all cultures. But, sadly, as in many other pieces of legislation in this House, there is only one world view, and that is definitely not indigenous.
The intensivists who deal with families coping with trauma in intensive care clearly understood all the issues. Transplant does not occur during the normal process of a person dying of a disease; it happens when families are in trauma. Tangata whenua are actually not totally opposed to transplant. Whānau have been more than willing to donate organs between their members while living, and this is already happening. It makes sense to us as tangata whenua. Dr Jessica Hutchings asked the question: “Is our current health system capable of responding appropriately and sufficiently to issues of protection, informed consent, Māori control of information and medical processes, access to information, and medical care?”. We would have to say no.
It is because of our deep-seated caution around such significant issues for Māori that our position in this second reading will be to oppose it. Never a party to give up, however, the Māori Party will be tabling a Supplementary Order Paper at the Committee stage of this bill to give this House the opportunity to create legislation that the Health Committee, by majority, passed up—the opportunity to create legislation that is inclusive of a Māori world view. Kia ora.
SUE KEDGLEY (Green) : The Green Party will be supporting the second reading of the Human Tissue Bill. I would like to speak briefly in my capacity as chair of the Health Committee. We gave this bill the same very objective consideration we gave the Health (Drinking Water) Amendment Bill. We approached the issue with a very open mind, and we listened very intently to submissions. It was a very collective process, and we came up with legislation and a report that we believe most responded to the issues and the submissions we heard.
The Human Tissue Bill is an incredibly complex bill. In fact, it is so complex that we asked the officials to put in flow charts to explain, for example, the consent process, because we felt that most New Zealanders reading this bill would not be able to understand it. Obviously the whole issue of giving organs and tissues from deceased persons is a very emotional and sensitive one. We heard submissions, on the one hand, from intensivists who have to deal with this issue on a daily basis, and, on the other hand, from persons whose children would stand to benefit from organs or would need them in the future. Those people have a very, very intense interest in increasing the very tragically low rate of organ donation in New Zealand.
I think that the select committee went about its consideration of the bill with an open mind. I can certainly say I did. In fact, when we began to consider the bill I expected I would be supporting a mandatory organ donor register, as the select committee had previously recommended. It really was only by listening to the submissions that I slowly came to change my mind. The reason I thought I would support an organ donor register was the reason that others have pointed out—namely, the tragically low numbers of organs being donated in New Zealand and the awareness of the huge and escalating demand that there will be for organs in New Zealand, particularly because of end-stage renal disease as a result of diabetes, and because of end-stage liver disease.
We noted that in America the number of people waiting for kidney organs alone has more than doubled over the past decade, and that that country is seriously considering whether a rationing system should be set up. The issues being considered include whether the young should be given priority, and whether older patients over the age of 70 or 79 would be accepted for organ donation. That is the level of debate being considered in America. Of course, we can cast our mind to China. Recently I attended a lecture about the Chinese situation of organ harvesting, whereby organs are taken from prisoners or from people who have been executed, presumably because the demand for organs in China is huge, as it is elsewhere in the world. Let us hope we never get to the stage that the Chinese have got to—harvesting organs from prisoners.
There was a turning point for me. I suspect that it was also the turning point for Steve Chadwick, who originally had a member’s bill calling for a mandatory organ donor register, and that it was the reason she withdrew her bill. That moment was when the intensivists pointed out that there was no evidence at present that having a mandatory organ donation register, or an opt-on one, actually increased organ donor rates.
The scientists said to us that if we were scientists we would have to have some demonstrable evidence that if we were going to introduce something pretty major—which establishing a register would be—it would work. They said that if scientists have to respond on the basis of proven evidence, why should not politicians? Why should politicians go ahead and recommend the establishment of an organ donor register when, in fact, we do not have any evidence from registers that have operated in other parts of the world that they actually result in an increase in the number of organs donated?
Given that our whole purpose as we debated that particular part of the legislation was to find a way to increase the number of organs donated in New Zealand, that certainly gave me—and I suspect other members—serious pause for thought. Why indeed would we set up a register when, at this stage, there is no evidence that a register works? That is why we came up with what I think was a compromise, which is that we will give regulatory powers for the Government to set up such a register if evidence emerges that it does result in an increase in organs donated. Ordinarily the Green Party is opposed to legislation that sets up regulatory powers for Governments to do quite significant things such as this, but on this occasion we supported it. We felt it was a very sensible way through the dilemma we faced—namely that if strong evidence does present itself, then a Government does not have to come back to this House but can act to set up a register using its regulatory powers, but it does have to demonstrate that there is international evidence, whereas at the moment the evidence is inconclusive.
The other point that has not been mentioned thus far, which also had a significant influence on my decision, was the realisation that, actually, there is only a tiny, tiny fraction of New Zealanders who could donate their organs. Sometimes when we listen to the debate on organ donation we ask why, with 4 million New Zealanders, are we not just handing over our organs? Why is there this problem of only 25 or 30 organs being donated? The truth is that there is only a tiny fraction of people who would ever be in a situation to donate an organ when they are deceased, and that is because they would have to be brain-dead and they would have to have tissue in very good order, and last year, for example, there were only 104 possible donors in New Zealand. So we are not talking about hundreds of people who are not donating organs. We were informed that because of the ability to keep people alive after accidents, the number of people who are clinically brain-dead and who have the right tissue is diminishing, which, as the intensivists told us, is one of the reasons that the numbers were not increasing.
There are huge moral and ethical issues surrounding the whole issue of organ donation. We—certainly the Green Party—totally respected the views expressed by the Māori Party and in particular by Tariana Turia about the views of tikanga Māori and the need for whānau to have the final say over whether to donate the organs of a deceased person. We accept that there are completely different views and values around death and the taking of organs between Pākehā and Māori and other cultures, and we strongly supported the Māori Party’s amendment that would have allowed whānau to have the final say over whether to donate an organ. We were very disappointed that the rest of the select committee did not support that. We are very pleased to hear that the Māori Party will be putting up that recommendation again.
It seems to me that the situation is as Tariana Turia said—we end up here imposing what we could say is the Pākehā view of death and organ donation rather than taking into account adequately the sensitivities of different cultural traditions, and I think that is a great shame. We tried very hard to achieve that. Officials worked with a Māori adviser, and I thought we came up with an excellent amendment, and I am deeply disappointed that it did not go through.
Obviously there are many other complex issues in this bill. Overall, we are pleased with it. We are particularly pleased with the way that informed consent is the fundamental underpinning of the entire bill, and that it will not be possible to use tissue or organs without informed consent. So with some misgivings we are pleased to support the bill.
JUDY TURNER (Deputy Leader—United Future) : I will take a brief call for United Future on the second reading of the Human Tissue Bill. We will be supporting the second reading. I would like to congratulate the Health Committee and Sue Kedgley as chair of that committee on working on what is a very complex bill. I would also like to congratulate Dr Jackie Blue. I am glad she is in the House tonight because I know that this is something she has been really passionate about. For her, the bill is a compromise position, and that is a hard pill to swallow, and I understand that.
Back in 2002, when United Future enjoyed representation on the Health Committee, I was able to be part of those early discussions around organ donation. Like Dr Jackie Blue and Sue Kedgley, I was very moved by the story of advocates like Andy Tookey to see what we could do to improve organ donation rates within New Zealand. At the time, a mandatory register seemed like an extremely sensible approach and a way of increasing the opportunity for organ donations within New Zealand.
But even back in 2002, one of the things I remember very clearly was the submission we received from intensivists, from those who work at the coalface of organ donation and intensive care wards with people who are on life-support machines and technically brain-dead, and their grieving families, who are in the process of making some horrendous decisions to turn off life-support. In those circumstances these amazing medics work with families to suggest the possibility that organ donation may be something they are able to consider. They said that we could regulate as much as we wanted regarding having a register, and making it mandatory, and closing the door for families to object once somebody had made up his or her mind—we could basically pass any law we liked—but they, as caring health professionals working with families and loved ones, were not ever going to insist that organs were harvested from a body against the wishes of a family.
I found that very compelling, and I have always believed that if Parliament is to do any work of substance, then we must make sure that what we are talking about is, no matter how ideal it is, actually able to be applied and implemented where it matters. The very clear message we got from doctors at that time was that although they agreed with us that it would be great to improve the donation rate within New Zealand, they were completely unconvinced that a register would secure a higher donation rate—that was their first point—and their second point was that we did not walk in their shoes. We did not understand the dynamics of the work that they do, and therefore we needed to be developing ideas in consultation with them, rather than dumping policy on them.
However, I think what the select committee has done in this regard is great. The fact that it has included a clause that permits the establishment of an opt-on register by regulation at a later date, should we consider that to be the way to go, is a very good step, and it means that we can revisit this if we get greater clarity on how we can proceed in a way that has efficacy.
Of course, the bill is about more than just organ donation. It is about the handling of all human tissue other than that which is covered under the Human Assisted Reproductive Technology Act, passed in the last Parliament. There are some interesting provisions that I remember our talking about in relation to that Act, such as trading in human tissue. I am really pleased to see that the committee recommended that the bill that existed at the first reading be amended so that offering, providing, requiring, or accepting financial or other considerations for human tissue was totally prohibited, ensuring that in New Zealand society we recognise the gift status of human tissue. The committee was very clear about making sure that the wording was not in any way able to undermine current provisions within Government policy that provide for income support for live donors—I think it is good to protect that policy gain—and it also reinforced the current status of blood donations as a gift.
Another interesting ethical dilemma that is touched on in the commentary on the bill is the collection and use of gametes and embryos from dead persons. I remember that when we considered the Human Assisted Reproductive Technology Act we read some really interesting case history. There was the infamous case in Britain where a woman was allowed to harvest sperm from her dead husband, then was unable, under British law, to use it to have a child by in vitro fertilisation. However, she was able to transfer it to France, from memory, and under French law was able to use it. The ethical dilemma that that creates around children being born to a biological parent who has long since died is an immense issue, but I think it is good that there is some reference to that, and I like the default position that the committee has arrived at. The clear wishes of the deceased need to be taken into consideration in these matters, particularly when dealing with, say, an unborn child whose mother has died in an accident but who is unable to be born live. Again, the law as it applies to the mother applies to the child, unless the child has previously been born.
A number of really interesting ethical issues come up in this bill. I think the select committee has done a very good job. We appreciate the fact that it insisted on some flow charts to guide us through the hierarchy of consents that it has put in place, because it is a very complicated issue. United Future is happy to support the second reading.
Dr JONATHAN COLEMAN (National—Northcote) : As has already been well canvassed by my colleague Dr Jackie Blue, National will be supporting the Human Tissue Bill. Other speakers before me have laid out quite clearly what the bill is all about, so I do not think we need to go over that again.
One of the things that is disappointing to National members is that the opportunity to establish an organ donor register has been lost. If we look at the bottom line, we have a real problem in this country with a lack of organ donors. Last year only 26 donors were available across the whole country to provide organs for those in need. At the same time we have this massive explosion in diseases like diabetes, hepatitis B, and hepatitis C. Those are all diseases where, at the end stages, if people are going to survive them they will need transplants of live organs. In the case of renal disease obviously they will need a kidney, and in the case of hepatitis they will need a liver. We are faced with the very real situation of a dire shortage of organs, and New Zealanders on waiting lists are dying every year because they cannot get the organs that they need. It is an emergency situation.
The Health Committee found a lot of common ground on this bill. It is fair to say that intellectually it is probably the most challenging bill we have been faced with during our time as a committee. But it also threw up quite a few points for discussion and some points of difference. The chairperson Sue Kedgley touched on the point that there was no evidence to support the establishment of a register. I think members need to consider that there is pretty much no evidence to support a lot of the things that are done in Parliament and decided upon, but Governments and political parties vote on those anyway. I think this situation, the possibility of creating an organ donor register, is one where we could have taken the bull by the horns and done something that has a chance of addressing this problem. It is true that the clear evidence may not be there yet, but it is good enough for people in Australia. They have decided that that is where they have to invest their money and invest their effort in dealing with this problem. It is good enough for people in many jurisdictions in the United States. They have established organ donor registers. We really have to do something about this problem. I commend my colleague Dr Jackie Blue for her member’s bill. I think it is a shame that it has not been incorporated as part of this bill, and that we could have come away from this debate with something concrete upon which to base future efforts in raising organ donation rates.
There were other points of contention. Tariana Turia gave a very thoughtful contribution before, outlining some of the cultural differences in approaches to tissue and organ donation, and those differences are very real. The National Party point of view is that informed consent on the part of the individual has to take primacy, and that basically if people make a decision during their lifetime that they want something to happen to their body parts, that should not be overruled. I can understand, though, from the perspective of other cultures that that is not an acceptable position and that we need to have an element of collective decision-making. The problem I see, though, is that in terms of collective decision-making we may never get the organs that we require for the donors who require them. I think that is something that as a society we have to find some sort of way around, because we do need a practical answer to this problem.
We heard from many submitters during the process who talked of the way their families had found some redemption and gained something positive out of the death of a loved one when they knew that those organs that their loved ones were giving up were going to give other people a chance at life. We are faced with a very real decrease in the numbers of organs available. One of the good things about the decreasing road toll, of course, is that there is much less needless waste of life on our roads every year. The flip side of that has been that fewer organs are available for transplant from those car crash victims who, while unable to continue with their own lives, do have healthy organs to offer up. That has had a real impact on the transplant scene. No one is suggesting that we want to see the road toll increase; the reduction has been a very positive thing. But at the same time we need to find ways to meet demands for those organs. It is going to be very, very important.
A key issue that came up during the select committee discussions was the trading of tissue. No one 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. Once again, it is a situation where we have to look at the needs of our whole society. We would not want some of our fine learning institutions around the country to be handicapped because they cannot get access to those tissues and materials that they need.
The issue of consent has been touched upon and, as members will see in the report from the select committee, its members constructed some fairly complex flow diagrams to try to clarify the issue. There is a hierarchy of people available to give consent. Gaining consent is quite a tortuous, convoluted path, but at the end of the day National believes that if an individual makes a decision about what he or she wants his or her body to be used for after passing on, that decision should be respected and no one should be able to overrule that. We think that if we held that point about the primacy of informed consent at the very centre of the tissue donation process, it really would protect the rights of the individual and it would also go quite some considerable way to addressing this issue of a shortage of donor organs.
I want to pay respect to Andy Tookey, a member of the public who has been very central to seeing something actually happen with regard to raising awareness of organ donation. He has been the driving force behind trying to establish an organ donation register. I know that he will be very disappointed that his dream has not been realised. He has put a lot of effort into this. He has a little girl who needs an organ. She is a brave little girl; she came before the select committee. It brought home to us as select committee members the real human cost involved in this whole organ shortage issue. I think that we as a society cannot just sit back and do nothing; we have to say that there is a donor problem in New Zealand. It will not just be good enough for people to be registered as donors on their drivers’ licences knowing that someone from their family can come and overrule their wishes, and that the destinations people would have wanted for their bodies will not come to pass—that they will not have the opportunity to give up their organs to give someone else the chance of life. Fundamentally, I think that is really wrong.
I had a lot of confidence in Jackie Blue’s bill—that that would go quite some way to addressing the problem. I think if we had had an organ donor register, and if it had had sufficient publicity, young people in New Zealand would have become educated about what they could do to put something back into society by becoming organ donors. I can tell the House that unless we actually have a supply of organs for donation—unless New Zealanders step up to the plate and say “Yes, I am prepared to be a donor.”, and unless we are going to respect that and not override people’s wishes to do with their organs as they so desire—we will have increasing numbers of New Zealanders on waiting lists dying of kidney failure and liver failure because they cannot get the organs they want, and that would be a tragedy.
As I say, National is supporting this bill. We have some reservations and we would have liked to see it go further, but I think this is a good start.
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Katie Tookey's story is on video.
Kiwis like Katie depend on 'the gift of life'.