Dr JACKIE BLUE (National) : It has been quite a while since we discussed the Human Tissue Bill; I believe it was in November last year. To recap, the bill will replace the Human Tissue Act 1964. It is quite an old Act, and it is time it was updated. At the same time that the Health Committee looked at the Human Tissue Bill, it looked at my member’s bill, the Human Tissue (Organ Donation) Amendment Bill. Unfortunately that bill did not get the support of the committee, and in Part 3 of the Human Tissue Bill there is a provision for an organ donor register for a future Government to bring in if it feels one is necessary.

To me that is not satisfactory. I believe there is a need for an organ donor register. At the moment we have Organ Donation New Zealand, which looks after the retrieval of organs throughout New Zealand. We have had terribly low organ donor rates in New Zealand, and although they seem to be picking up we are still way back from where we were a few years ago. It seems to me we are not making much progress, and without a register where people can indicate their wishes for where their organs are to go after death, there is no framework for an informed consent process. That is basically what this bill is all about; it gives a consent framework in which the individual’s wishes, if they meet the definition of informed consent, are given primacy. I think we are no better off. We will only be treading water and waiting for time and waiting for organ donor rates that might improve a little. But really we are going backwards. We have a diabetes epidemic, we have a tidal wave of renal failure coming our way, we have hepatitis issues, and we have end-stage liver failure problems, and so forth.

I will digress a little. In the news today there has been the story of an 18-year-old woman with a young baby who wishes to donate part of her liver to her young child, a baby who has a liver disorder. By the time the child is 3 years of age she will need an organ donor. Although this is a live organ donation, this bill is about deceased donor organs. I make the point that it is never too late to review the situation. In the Auckland transplant unit the ethics committee was very careful 7 years ago when the unit first started to do this organ donation procedure, and the ethics committee decided that 21 should be the age for consent. This liver donation procedure is now pretty much standard 7 years on, and I think it is time to review that age of consent. I hope the doctors will go back to the ethics committee and ask for some discretion on moving downwards to age 18. I hope that will happen quite quickly so that this young woman can donate part of her liver in order to save her baby’s life. I think that is all about the primacy of an individual’s wishes, and about moving forward. I make that point just to show that it is never too late to go back and review something.

In the UK, Gordon Brown has come out and said “Look, they need presumed consent.” That is a step further than the voluntary, opt-on register that I proposed in my member’s bill. So the UK is not reinventing the wheel; it is actually going further than what I proposed. I do not believe New Zealand is ready for a presumed consent register, but I think we desperately need an organ donor register so we can have an informed consent process. I keep coming back to that. This whole bill is about providing a consent framework where an individual’s wishes, if they meet the definition of informed consent, are given primacy. Basically, without an organ donor register there is no way an individual can give informed consent or dictate to people what that person wishes to do with his or her organs, unless he or she has some sort of living will or hopes that the relatives will do the right thing by him or her after death. Some people do not have a family. It is a very private decision, and those people may want to keep it to themselves. I keep coming back to the fact that without an organ donor register, people have no way of registering their consent.

That is probably all I have to say, and to sum it up, I am very unhappy about the situation.

• The question was put that the amendments set out on Supplementary Order Paper 155 in the name of the Hon Pete Hodgson to Part 3 be agreed to.

• Amendments agreed to.

• Part 3 as amended agreed to.

The CHAIRPERSON (Hon Marian Hobbs): The amendments set out on Supplementary Order Paper 156 in the name of the Hon Tariana Turia are out of order.

Dr JACKIE BLUE (National) : I would like to talk about the title of the Human Tissue Bill. This bill is very comprehensive. The Health Committee took a long time and there were a lot of submissions on it. As I said before, we looked at this bill as well as the organ donation member’s bill. We had a lot of submissions on both bills. There were grave concerns, as I indicated, about the fact that an organ donor register was not supported by the Health Committee. The provision in Part 3 of the Human Tissue Bill basically gives an opening for a future Government to bring in a register, but the fact is that our organ donor rates have been appalling. They are picking up slowly at this point in time, but we are only really where we were 5 years ago. Without a mechanism whereby people can register whether they want to donate their organs after death, there is no informed consent process. Really, that is the basis of the whole bill, which the National Party absolutely supports. The desire of an individual to donate his or her organs should have primacy, and if a person follows an informed consent process that should be upheld at all costs.

I know that the Māori Party had concerns with regard to its own people. If a dead person was Māori, that party thought that the family should have primacy over determining where the person’s organs should go. When that was discussed in the Health Committee, we felt there were a number of clauses that covered the Māori Party’s concerns. They are, from memory, clauses 10C, 27C, and 37A. They all say similar things in different ways, but basically they say that the people taking the organs should take into consideration the cultural context of the donor and his or her family. That really is the out for Māori, and I think that will be respected. That is why those clauses are there. So I hope that in time the Māori Party will see that this legislation does work.

There were some other changes in the bill regarding matters that had to be exempted. We heard from CordBank, which is a private bank in Auckland that takes blood from the umbilical cord of babies. Umbilical cord blood is very rich in stem cells, which are very basic cells that can be turned into other cells over time. The treatment now for children who have blood cancers is that their stem cells can be used to help treat various types of blood cancer, if they go on to develop one of them. Of course, if the blood is chucked out at birth, it is lost. The blood cannot be used if it is discarded, and we cannot go back and get the stem cells. That blood is a rich source of stem cells. CordBank pays midwives or other individuals to collect the cord blood, and that is not allowed for in this bill, so a special exemption had to be made for CordBank.

We heard from universities that were very concerned that some aspects of the bill in its original format would have stopped all forms of research—they would have made it just too difficult. We heard from universities that were very concerned that research would come to a standstill because of the logistics that would be required to try to trace back informed consent to where the original cells had come from. Again, exemptions were made, and now, in the bill’s final form, universities can work comfortably in their research development.

The whole point of the bill is to cover the potential use of tissue that comes primarily from deceased people. It also covers the use of tissue for education, research, and audit purposes, and the use of cadavers in medical schools. It covers the regulation of the trade in tissue, both export and import, and also covers schools of anatomy. Certainly it allows for the provision of an opt-on organ donation register, if a future Government sees fit to introduce one.

I guess organ donation is a bee in my bonnet, but it is something I feel quite passionate about. We are left with Organ Donation New Zealand, which is doing its best in trying to upgrade the services around New Zealand. But we have no education programme. The public are passionate about this issue. Talkback is going mad about the young woman who wants to donate part of her liver to her young child. This is a live donation issue; it is about the right of an adult. Now this woman is 18, and when the ethics committee first started to look at this procedure it was very careful and wanted to tread very carefully, so it said the age should be 21. But 7 years on, when this procedure is now a standard practice, the committee should revisit that. The committee hopefully will go back, review that, and give the doctors some discretion, so that they can look at using a donation from an 18-year old woman.

JO GOODHEW (National—Aoraki) : I rise to take what will be just a brief call. My colleague Dr Jackie Blue has outlined in this debate on clauses 1 and 2 of the Human Tissue Bill a lot of the detail that we went into in the Health Committee. It was an arduous task, because for many of the committee and even for those of us with some form of history around the health professions, there was the issue of the technology: a lot of jargon, and a lot of things that we had to get our heads around in the bill.

I want to say just very briefly that this bill, I believe, has had a secondary effect that we may not have expected of it: a lot of publicity has been generated around not just this bill but also Dr Jackie Blue’s member’s bill. There has been a lot of debate about how important it is that New Zealanders who are able to donate their organs come forward and do so, and also that the one thing, in essence, that intending donors must do is to discuss their wishes with their nearest and dearest, the people around them. Those people need to understand the person’s wishes, so that in the unfortunate circumstance of the person becoming a potential donor, it is clear to all exactly what that person would have as his or her own particular wishes. This publicity, I understand, has meant a slight jump in the number of donors in the last year. The number of donors is nowhere near the number that New Zealand needs, whether they be live donors or people who have unfortunately died, but nevertheless there has been a small jump in that respect.

• Progress reported.

• Report adopted.