JO GOODHEW (National—Aoraki) : I rise to speak on Part 1 of the Human Tissue Bill. I do so to let members know that this bill has been gone over very carefully in the select committee. Part 1 describes the purpose of the bill. The purpose of the Act will be to ensure that the collection and use of human tissue occurs only with proper recognition of, and respect for, the autonomy and dignity of the individual whose tissue has been collected; the cultural and spiritual needs, values, and beliefs of that person and their immediate family; and the cultural, ethical, and spiritual implications of the collection of the human tissue, as well. It also takes into account the public good associated with the collection of tissue.

One of the purposes of the bill is also to ensure that it does not endanger the health and safety of members of the public, and that it does not involve the requirement, acceptance, offering, or provision—and this is one of the parts of the bill that the committee was at pains to make sure it got right—of financial or other consideration for the tissue.

During the discussions on the bill, we had to get very clear in our minds that where there was a charge for the storage of human tissue, in the case of blood that was collected after the birth of a baby and stored for later use, or perhaps blood that was collected for use in blood parts, like transfusion, or other parts of blood that were used and perhaps sold to a particular district health board, those sorts of things did not become prohibited by the bill. It was very important that we got those details right.

This bill replaces the Human Tissue Act 1964, and just knowing that it has been 43 years since the Human Tissue Act 1964 means that this bill is necessitated by changes in technology—the modernisation of the technology that we use—and in the way we must view the way tissue can be used for the betterment of humankind, to promote the solving of the riddles around disease, and also, as we well know, how tissue can be used in organ donation.

When it came to the purpose of this bill, we were always mindful of the fact that one of the forefront issues was whether human tissue could be used for donation. The very next day following the second reading of this bill, on the front page of the Timaru Herald was an example of how human tissue had been donated by a 17-year-old. In fact, he had had no part in making that decision, but his parents did.

Equally, there has been some confusion about the register issue in this bill—confusion that obviously has not been resolved, because the editor of the Timaru Herald said that there is widespread understanding that creating an organ donation register would increase the number of organ donations. In fact, the select committee was told quite the opposite—that there is insufficient proof that an organ donation register would be useful.

A number of quite technical phrases are described in Part 1. We came to understand that “anatomical examination” means the examination of the body, or of part of the body, for the purpose of study and practice in the science of anatomy. Of course, for many, many decades—in fact, for hundreds of years—bodies have been donated to science. Medical students—and, I have to say, dental students and other students—would tell us that they have had the use of human tissue to learn from. As a nurse working in Dunedin Hospital, I had the opportunity to learn much about the function of the brain. We used brains from people who had died from some disease or from something that had happened to them. That helped us to learn, as nurses, what we were nursing in the ward, which was a neurosurgical or neurological ward.

One of the phrases in the bill that was quite difficult to understand was “health care procedure”. We needed to understand just exactly what a health care procedure was, in order to understand also what a non - health care procedure was.

Dr JONATHAN COLEMAN (National—Northcote) : Just following on from what my colleague Jo Goodhew said about this bill, I think, really, there were two main points from the National Party’s point of view. The first one was that this bill would have been a great opportunity to introduce a voluntary opt-on donor register. We made that point very strongly in our minority report.

We were hearing this bill at the same time as were hearing Dr Jackie Blue’s member’s bill. It is a real shame that that bill was not able to be incorporated as part of this bill.

I think that it was pretty well established, and that all parties would agree, that there is a very real need to increase the donation rate in New Zealand. We had only 26 people coming forward to donate organs last year. When we are looking at a situation whereby we are facing increasing rates of end-stage diseases like diabetes or end-stage liver failure, when the only hope for people is to receive a donor organ, it is quite clear that something has to be done about it.

It is also notable that two previous select committees had recommended the establishment of a voluntary opt-on donor register. Indeed, Labour Party policy at the last election was that it was going to institute such a register. It is a real shame that that opportunity has been missed. Nevertheless, I think it is something that will come up again and again, and that Parliament will have opportunities in the future to make decisions on it.

The second issue that National really felt strongly about, which we expressed in our minority report, is the issue of the primacy of informed consent. As I think anyone could see from reading this bill, and from hearing some of the debate, it is an extremely technical bill. Intellectually, I think it is probably the most challenging bill we have had before the Health Committee this year. But when we looked at it we could see that one of the key things it was talking about was the issue of informed consent.

The National Party feels very strongly that it is important that people have the right to determine what happens to their tissue after they pass on. Issues were raised about the cultural context of informed consent, and we certainly had some lengthy debate on that. I hope we are going to hear about that issue from the Māori Party at some stage during this debate, because its members certainly had a different perspective from that held by my colleagues in the National Party.

But at the end of the day, I do not think we will get anywhere very fast or come to any substantial destination on this whole issue of human tissue donation, and on the rights of people to determine what happens to their body parts and body tissue, unless we hold that concept of the primacy of informed consent at the very heart of the debate.

Those two points really explain the minority report that National has submitted: that we wanted to see the voluntary opt-on donor register, and that we are very concerned that in all the technical jargon the concept of informed consent is not lost in the process.

As Jo Goodhew was saying, this Human Tissue Bill—the Government bill—replaces the Human Tissue Act 1964. It tidies up some areas of the legislation that need to be updated to take into account some of the technological developments that have happened in the 40 years since the original bill came into being.

One issue that really concerned some of the universities that came before us was the provision in the bill where it talks about regulating the sale and trade of human tissue. It has to be noted that the ability of universities to conduct research and remain world-class institutions is an issue that was brought to our attention. It figured quite heavily in our deliberation and in our thinking, because although no one wants to see the sale and trade of human organs and body parts in an unregulated, commercial market, and although no one would want to see the unregulated import of human tissue and body parts into New Zealand, academic institutions have to be able to import slides and specimens for the purposes of research and academic debate. So we have to be practical when looking at these issues of human tissue, human tissue handling, and the ability for body parts and, indeed, tissue to be used for the purposes of research, let alone when looking at the whole issue of donation.

The real impetus for this bill has been the shortage of donor organs in New Zealand. It is not something that will be easily remedied, but, as I say, in terms of National’s minority report, it is something that we would be really keen to see. Thank you.

BARBARA STEWART (NZ First) : It is a pleasure to take a call on Part 1 of the Human Tissue Bill. As previous speakers have said, this bill actually replaces the Human Tissue Act of 1964.

When we look at Part 1, we see that it focuses on the “General provisions” around the bill. A number of definitions are listed in Part 1, and explained and updated to be relevant in today’s society. One of the interesting clauses is clause 7A, which defines who is a “close available relative”. It looks at that in subclause (1) in relation to a “close available relative … who was 16 years or older at the time when he or she died,” or, in subclause (2), in relation to a “close available relative … who was under 16 years of age at the time when he or she died,”. It is quite interesting to see what process actually has to be followed if one of those situations occurs. This clause states that a “close available relative” is either “a spouse, civil union partner, or de facto partner”, or the “close available relative” could be “a parent of the individual;”. The provision goes through a whole lot of scenarios that were previously not in the Human Tissue Act, and it is good to define that clearly. In the Health Committee, we discussed extensively the cultural context of a person who is a “close available relative”, as well.

All in all, in the select committee we believed that this was a very good opportunity to discuss the issue and to hear the views of the people of New Zealand. We were very aware at the time that there was no way we could actually satisfy everyone, and although we would have liked to satisfy Andy Tookey and have a compulsory, binding organ donor register, it was generally felt that merely setting up a register was not going to be the way to ensure that a register was successful. We want to ensure that anything that is set up is totally successful. I must say that we have not had a lot of information circulated widely in the community about becoming an organ donor. I was very interested today to see in Change the World for Fifteen Bucks—a book that MPs received from New Zealand Post, and we must thank New Zealand Post for it—that action 15, one of the ways to make a change for the world, is to register as an organ donor. I will quote some of the words here, because I thought they were quite telling, quite poignant, in their own way: “After you have died let your heart beat inside someone else’s chest. Let your liver live after you have passed on. Even your eyes could give somebody else a new look.”

The book reminds us that in 2005 there were only 25 organ donors in the whole of New Zealand, and that here we have one of the countries with the lowest organ donor rates in the world. We know that a lot of organ donors think they have done their bit when they tick their driver’s licence, but it is a shame that that is really only the very start of the process and is not a binding register. There is no way that that can be taken to be part of a binding register in any way. We in the select committee were very interested to hear the various views from the groups involved in this, and it was interesting, when looking at the definitions and going through some of those definitions to ensure they were updated, to see who was involved in making the decision—who were the immediate family. In this, we had a very interesting discussion initiated by the Māori Party, about who actually owned a person’s body when that person passed on—whether the whole whānau owned it or whether the person owned it. We had a very interesting discussion when we went through this particular bill.

We are very aware, too, that with the shortage of organs we will have in the future, many, many more people are waiting, or are on medication and anxiously hoping that some organ will become available that they may be a tissue match for, so they may be a recipient, and live a reasonable quality of life. I know that for some of the submitters we saw, compulsory organ donation was the way they believed we should go—that when one died, one should have mandatorily signed one’s body over to the State for whatever organs were required.

LESLEY SOPER (Labour) : I am very happy to rise to take a call in the Committee stage of the Human Tissue Bill tonight, on Part 1. I was a member of the Health Committee through its consideration and the hearing of evidence from 19 of the 31 submitters, which we heard largely in conjunction with submissions on the Human Tissue (Organ Donation) Amendment Bill—a less comprehensive bill that has now been discharged in favour of this Human Tissue Bill.

Once this bill is enacted it will replace the Human Tissue Act 1964, and I want to take this opportunity to congratulate the Minister and the chair of the select committee, Sue Kedgley, on ending up with an excellent piece of updated legislation, through a very complicated process of submissions and very technical data around the use of human tissue. I think the fact that we did need flow-chart diagrams in the schedules to the bill to clarify the hierarchies of consent for some particular uses of human tissue illustrates just what a complex bill this one was to deliberate on. I believe that the select committee has done a very careful and thorough job, and that we can all be very proud of ending up with a bill that provides a robust framework for regulating the collection, storage, and use of human tissue, primarily from deceased people.

The bill also regulates trading in tissue, the export and import of tissue, and the use of tissue for non-therapeutic purposes—for example, for research, education, audit, and anatomical examination. It very clearly makes informed consent the fundamental principle underlying the lawful collection and use of human tissue. In so doing, it brings consistency with the Code of Health and Disability Consumers’ Rights, and that is a not insignificant achievement.

The bill sets out who is able to give informed consent in four different circumstances: firstly, the collection and use of tissue from a deceased person for general purposes, including organ and tissue donation and research; secondly, the collection and use of tissue from a deceased person for anatomical examination or public display; thirdly, the use of tissue collected from a living person for a secondary purpose after his or her death; and, fourthly, 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 different for each situation, so the flow charts, as I said, are a very good thing.

As a general statement, I would say that the Human Tissue Bill has striven to strike a clear balance between respect for the wishes of a deceased person and the cultural and spiritual needs of his or her family in dealing with a highly sensitive set of issues around human tissue collection and use. We heard during the hearing of submissions many, many heartfelt submissions for and against individual or family decisions on these matters. Certainly, during the time of the submissions I spoke with a dying friend, who was very clear that if any of her organs were able to be used—or, in fact, if any parts of her body were able to be used—for organ donation or research, that was her wish, and she was totally opposed to any veto of that decision.

In the end this bill has a proposed framework that gives primacy to any informed consent given, or objection raised, by the individual whose tissue might be collected or used. However, there was an understanding from the select committee—and many submissions touched on this point—of the difficulty of enforcing an individual’s wishes against those of a deceased’s family, so there is provision in the bill for a decision not to proceed, for informed objection, and for taking into account the cultural and spiritual needs of the family. I think we have a good balance there. I am very pleased that the bill provides an enabling clause for the setting up of an organ and tissue donor opt-on register by regulation at a later date. We clearly heard that the evidence, which we explored very thoroughly during the submissions and research on the bill, shows conclusively that a register will not be effective at this point, but the enabling clause that we as a select committee recommended be put into the bill does provide for a register when the evidence shows it will be effective. The international evidence will give us that ability at some later stage. I am very pleased to commend this bill, including Part 1, to the Committee.

TE URUROA FLAVELL (Māori Party—Waiariki) : Tēnā koe e te Māngai o te Whare. Kia ora tātou i tēnei pō. Kua tū ake ki te whakamārama i ngā kōrero e pā ana ki tēnei take me te kī, ka kōrerohia ngā kōrero i te reo Māori. Nā runga i te aha? Nā runga i te mea, he take nui rawa atu tēnei ki te ao Māori. Ko tēnei pire, i heria haerehia i te mata o te whenua i ngā wiki kua hipa ake, me te pātai i te marea, ā, tēnā, pēhea ō koutou whakaaro mō tēnei pire? Me kī, mō tata ki te kotahi tau i nāianei, ko au tētahi kua heri tēnei pire me ōna kōrero katoa ki roto i te marea ki te whakamātautau i te hōhonutanga o tēnei o ngā pire kia ngāi tātau.

Kua tū ake anō rā i te mea, nā Tariana Turia tētahi pepa āpitihanga hei whakatakoto ki mua i te aroaro o te Whare i tēnei pō. Ka riro māku tērā pepa e kōrero.

Ko te mate kē o tēnei pire, e hoa mā, he āhua noho tukituki nei i Te Ao Māori me te ao Pākehā nā runga i te rere kētanga o te whakaaro mō te katoa o te tinana o te tangata, te wairua o te tangata, ēnei āhua tangata katoa, e kōrerohia nei e tātau.

Kei te mōhio tonu au, ruarua noa iho ngā ingoa Māori kai runga i te rārangi ingoa o te motu, ruarua noa iho.

Nā, e rua ngā wāhanga i kōrerohia e au, i whakamāramatia ake e au me kī, ki ngā hoa. Tuatahi, tērā e pā ana ki te tuku o te tangata ora i tētahi wāhanga o tana tinana ki tētahi atu tangata e ora tonu ana. Pēnei i a Jona Lomu. Ā, tērā kōrero tērā. Ka rua, mēnā kua mate tētahi tangata ka mutu, ko tētahi wāhanga o tana tinana e pai ana mō tētahi atu. Nō reira, koi nei ngā uauatanga i roto i ngā kōrero i kōrerohia, ko ngā huarahi e rua. Nā i āhua rongo nei ngā taringa o Te Ao Māori ki tērā raruraru o te tangata e āhua tata mate nei me te koha i tētahi wāhanga o tana tinana ki tētahi atu kia ora tonu atu a ia. Āe, i āhua rata mai ētahi ki tērā. Tērā te take nui rawa atu ki Te Ao Māori, ko te tangata tata mate, mate rānei me te koha o tētahi wāhanga o tana tinana ki tētahi kia ora tonu a ia.

I kite tātau i tērā take nui i roto o Tāmaki-makau-rau i ngā tau kua hipa, arā, ko te ngaronga o ētahi wāhanga o te tinana o te tangata i te hōhipera, ā, ka hoki ki te whānau, kātahi ka rongo te whānau, ha, kua ngaro tētahi wāhanga o te tinana. Kātahi ka ohorere. E ai ki tā Te Ao Māori, kia haere te tangata ki te kōpū o Papatūānuku me haere katoa a ia. Kia kaua e waiho tētahi wāhanga ki kō, ki kō, ki te hōhipera, ki hea rānei.

Nō reira, waiho tērā kōrero ki reira. Ka hoki ki te wāhanga tuarua, ko tētahi take nui, whakaharahara i kōrerohia i roto i te pānuitanga tuatahi, tuarua, ko tērā e pā ana ki te āhei o te whānau ki te whakatau i ngā kōrero katoa mō tērā tangata i runga ake i tōna ake hiahia, tōna ake whakatau. Koi nei te pūtake o te pepa āptihanga nei a Tariana Turia, o tērā mea. Kia kore te ao Pākehā e tāmi i Te Ao Māori engari, kia āhei te ao Māori ki te whai i tāna e pīrangi nei.

• [An interpretation in English was given to the House.]

[Greetings to you, Mr Chairman, and to us tonight. I rise to explain matters relating to this bill, and to say as well that I will speak in Māori. And for what purpose? Because this matter is of huge significance to Māori. This bill has been taken about the country in the past weeks, with the public being asked their views on it. That has been going on for nearly a year now, and I was one of those who took this bill and all the information about it amongst the public to make an in-depth examination of it for our people.

I rise as well because amongst the Supplementary Order Papers to be placed before the House tonight is one from Tariana Turia, which I will be addressing.

The real problem with this bill is that there is a slight clash of viewpoints between a Māori and a non-Māori perspective, in respect of the total human body, its spirituality, and all aspects of the human body that we are debating.

I am well aware that the number of Māori names listed in the national register is minimal—very small indeed.

I have talked about two areas, and explained the matter in detail to colleagues. Firstly, there is the situation of a living person donating part of his or her body to another living person, like Jonah Lomu. Secondly, there is the situation where a person dies and a part of his or her body is suitable for someone else. So difficulties such as those two are what we are hearing about. The difficulty facing a person near death about donating a part of his or her body to someone else so that the other person may live longer has come to the attention of Māoridom in a somewhat indirect way. Yes, some are gratified by that. For a person near death gifting a part of his or her body, or for one who plans to so before dying, to prolong the life of someone else, is regarded in the Māori world as a very important issue.

We saw the consequence of that in an issue in Auckland some years back, which escalated when some body parts were misplaced in the hospital. When the body was returned to the family they discovered, much to their alarm, that parts of it were missing. What a panic it created! From a Māori cultural perspective, the entire body goes back to the bosom of mother Earth. Body parts are never to be left here, there, in hospital, or wherever.

So let us leave that point there. I go back to the second part, to a crucial and very important point that was made in the first and second reading of the bill, relating to the family’s ability to settle everything over and above what a person wishes or deems personally. That is the crux of Tariana Turia’s Supplementary Order Paper, in that Pākehā perspectives should never suppress the world of Māori, and that it should retain its ability to pursue that which it desires.]

Ka pai, kāti ake kua rahi tērā. Mr Chairman, kia huri ki te reo Pākehā,

[Enough. That is sufficient. Mr Chairman, I shall turn to English] to catch up on some of the key issues. Firstly, I will catch up again on this issue that I have taken on the road and tried to test out amongst Māori communities. I have to say that the reaction has been varied. We have attempted to do this for over a year or so.

The two key concerns seem to be in the clash of ideology—or philosophy, if you like—in respect of how we view death, how we view body parts, and so on. Those are the issues that seem to come up. There were two lines that really interested people. One of those lines concerned when a person is still alive and donates his or her body parts or tissues to another person. Some understood that there is a connection there—in particular, say, with one’s own child. Also, some of our people understood the issue of somebody gifting a body part to somebody else.

The other issue, in respect of a person who is dying or close to death giving organs to somebody else in order to allow that person to live, almost seemed to be at odds with how people really felt about it. Until one is in that situation, one will never really understand how important those sorts of issues are. As we went around discussing this I noted that not a lot of Māori were on the register, and it would be fair to say, of course, that many Māori would be the ones who would be screaming out for some of the organs or body parts that we are talking about.

The issue that Tariana Turia has raised by way of her Supplementary Order Paper is very, very serious in terms of Te Ao Māori. Although, I understand from Tariana Turia, some of those concerns were also raised by a number of submitters in the Health Committee, both in respect of this bill and Jackie Blue’s, those issues are so serious that we felt it appropriate to put up a Supplementary Order Paper. Although the Māori Party fully acknowledges that many New Zealanders believe that they themselves as individuals should have the sole right to decide the fate of their bodies upon death, it is not a belief that generally fits within tikanga Māori. In a tikanga context, appreciation needs to be given also to the collective wishes of the whānau alongside those of the individual. Although the Māori Party holds the expectation that all legislation should recognise tikanga Māori, as was anticipated in the signing of the Treaty of Waitangi, this is especially so with any legislation concerning whakapapa material. I suppose it is an entirely reasonable expectation that in Aotearoa New Zealand any laws concerning human remains could acknowledge the world view of tangata whenua, thereby giving recognition to the rights of the collective alongside Western World views that give precedence to the rights of the individual. The purpose of our Supplementary Order Paper is to open the bill’s consent framework to both world views and create a truly bicultural law. Given the presence of both our nation’s and other culture’s world views that esteem the collective, there is also the opportunity to create a multicultural law.

The real concerns that came up in our discussions have been about the ability for the whānau to overrule the desires of anybody who might be passing on, or that sort of situation—the part that the whānau might play in respect of decision making. I suppose it all came to a head last week at a hui back home where there were some judges. I put it to them to discuss this question: if somebody was passing away, who, in the end, should have the overriding say? Firstly, a person who was actually dying, by way of a will; secondly, his or her whānau if they happened to be looking after that particular person over a long period of time; or, in our case, in our construct, iwi Māori? On a straw vote we came to an end result; it was a three-way split. Everybody was pretty much convinced that, yes, the individual has some rights, and, yes, the family has some rights, but in particular Te Ao Māori have some rights as well. For example, some might say that it is appropriate for us to pick up our tūpāpaku and take him or her back to the marae, because in not doing that one may as well burn down the wharenui if that will not be the place where we can lay our dead to rest.

Now I know that is really opening up the debate to a real big picture in respect of this, but I am trying to make the point that this is part of the discussion that happens amongst Māori communities, and we want to make some sort of presence felt in respect of this issue on the back of Tariana Turia’s Supplementary Order Paper. We hope the Committee will give it its full attention when we get to that point. Kia ora tātou.

Hon DAVID CUNLIFFE (Minister of Health) : It is my pleasure to take a very quick call on the Human Tissue Bill, and to thank all members of the Committee for the very constructive spirit that has been evident in this debate.

Clearly, issues of human tissue, of personal human remains, and of the use of human tissue for medical purposes are amongst the most personal and sensitive of matters that are likely to come before this House. It is gratifying, therefore, that members on all sides of the House have given this matter very careful consideration at the select committee and in the Chamber. I extend my thanks and congratulations to the Health Committee on the care of its deliberations. I think we have a bill that will stand scrutiny, and that clearly bears the hallmarks of the submissions made to it, and for that both I and the ministry are grateful.

Several important issues have been raised on the Chamber floor in this discussion. I turn first to the latter contribution from the member, Mr Flavell, to say that although I have great respect for the perspective that he represents, I cannot share his assertion that the bill is contrary to the Treaty of Waitangi. The bill is, in my view, a permissive bill, which establishes, at a minimum, the rights and responsibilities of the individual in respect of human tissue, but does not preclude the role of whānui in forming a collective decision that may influence the individual should that be appropriate. I earnestly hope that the appropriate tikanga will be followed in Māori communities as is possible, but not compulsorily, admittedly, within the structure of the bill. I know that the committee has given those matters careful and respectful consideration.

Members opposite have also raised the question of a voluntary organ and tissue donor register, and on this issue I believe the select committee has taken extensive advice and also provided careful consideration. I am advised that as of 1 January there were 433 people on a waiting list for a kidney transplant, 13 waiting for a liver, five for a heart, eight for a lung, and four for a pancreas-kidney transplant, so this is a very important matter. I am further advised that there are currently only some 36 people who have actually provided whole organ donations in the last year—a number that I think most New Zealanders would find surprisingly low.

I know that many of us in this Chamber probably have on our driver’s licence the little word “donor” down in the bottom corner. I would take this opportunity to encourage all New Zealanders to consider taking that step, as I have, because the reality is that by the time the question is asked one has no more need of those organs. Of course, it is a personal decision; it is a very private decision. But I think that we need to encourage organ donation. However, the evidence does not support the proposition that a voluntary register is the best or only way of doing that. I believe, rather, that a combination of developing clinical expertise to improve identification and management of potential donors, combined with improved processes used to request donations from family members, and coordination between the various parties involved in organ and tissue removal is likely to provide the best combination of services.

Again, the bill is permissive in the sense that it provides for the Governor-General to make by Order in Council a regulation to set up such a voluntary register at a future point in time when the international evidence is at the point where it would support that in terms of the objective of the bill.

I am pleased that there is widespread support in the Committee for this bill. Again, I thank all members for the constructive and thoughtful way in which they have approached this most sensitive of issues.

• The question was put that the amendment set out on Supplementary Order Paper 156 in the name of Tariana Turia to clause 7 be agreed to.

The CHAIRPERSON (Hon Clem Simich): We now come to Part 2, clauses 10 to 63. There are six subparts therein.

Dr JACKIE BLUE (National) : I rise to speak to Part 2 of the Human Tissue Bill. Part 2 is quite a comprehensive part, with a number of clauses. I would like to concentrate just on clauses 10C, 27C, and 37A. They are to do with the cultural context of informed consent. I know that there have been discussions earlier about the Supplementary Order Paper put forward by the Māori Party, but these three clauses, I believe, should satisfy the Māori Party, hopefully, that the family can be involved in the decision making. The whole decision as to who has primacy—whether it is the individual or whether it is the family—was a source of contention. That was certainly the case with the register that was proposed in my member’s bill.

I know that the Māori Party has great difficulty with these clauses, and its wish was to amend the bill so that the clauses would state that if a dead individual was Māori, then the family could override the dead individual’s express wishes. Again, this would have overridden the Human Tissue Bill’s framework of primacy, given that the individual’s wishes are given primacy at all times. The National Party certainly supports the primacy framework and is disappointed that the register will not be supported. Without a register there is no informed consent process, and we cannot see how the Human Tissue Bill can work in this respect.

I go back to clause 10C, which states: “A person who proposes to collect or use human tissue is justified in deciding not to do so if satisfied, based on all information available to the person in the circumstances, that any informed consent for the collection or use of that tissue should for any reason not be acted on.” This clause gives powers to the person who proposes to collect human tissue to take into account the family’s or other family members’ objections or concerns.

Similarly, clause 27C, “Person assumed to have taken into account immediate family’s cultural and spiritual needs, values, and beliefs”, states: “A person who proposes to collect or use human tissue is, unless that person is aware of evidence to the contrary, entitled to assume that a person giving informed consent or raising an informed objection or overriding objection has complied with section 37A.” Again, the person must take into account the immediate family’s cultural and spiritual needs, values, and beliefs. I believe that those two clauses—along with clause 10C—should, hopefully, give the Māori Party some comfort.

Another clause that is very similar is clause 37A. It states: “A person giving informed consent or raising an informed objection or overriding objection must take into account, so far as they are known to the person based on information to the person in the circumstances, and decide what weight the person wishes to give to, the cultural and spiritual needs, values, and beliefs of the immediate family of the individual whose tissue is, or is not, to be collected.”

So I think that these three clauses are really quite comprehensive. They spell it out. They are a wee bit repetitive in that they say the same thing in different ways, but they certainly acknowledge the fact that in a situation where other members of the family have wishes or objections, they must be taken into account. I hope that will satisfy the Māori Party. I believe that those clauses give cultural context to informed consent and certainly allow for families’ wishes to be taken into account.

I would like to move on to clause 55, “Trading in human tissue generally prohibited”. There are a number of subclauses to it. It provides that a person is not allowed to take a fee or accept any payment when trading in human tissue. We heard from a private company, CordBank, during the course of submissions. CordBank collects umbilical blood from newborn babies. That blood is stored in a bank. What is good about umbilical blood is that it has all the rich stem cells from which our other cells can differentiate. Potentially, cord blood, if stored, could be very useful for treatment if that baby develops a type of blood cancer in the future. The CordBank organisation was very concerned with this issue of not having payment and worried that it would have to close its doors. Happily, an exemption has been made for that organisation.

• The question was put that the amendment set out on Supplementary Order Paper 156 in the name of Tariana Turia to insert new clause 27CA be agreed to.