Questions from the Floor

Linda Clark: Thank you very much. Well you have heard all of our speakers now and now is the chance for you to put some of the questions you have been storing up. Let me say that our guest, the very entertaining Professor Faull, has to rush out very shortly to catch a plane. He is a very brave soul indeed! If you have a question for him in particular, if you would like to put up your hands and we will do some of those first.

??: I understand that there are now about 70 confirmed and lasting treatments and cures for conditions that have been developed as a result of adult stem cell research and that there have been zero treatments from embryonic stem cell research – except for Dr Wang’s research in South Korea, which has now been discredited. Would it not be wiser to put our tax money into adult stem cell research, which is getting the results, rather than into human embryo research, which the public obviously are uneasy about it, and also with many people agreeing with modern science that life begins at conception?

Ruth Fitzgerald: First, I wish I could be as confident as you are that adult stem cells have produced those cures. I am not aware of that landslide of cure. In fact, one of the problems we have in the adult stem cells in the human brain is that many indications are that they are not as versatile as we first thought. Frankly, the science has not been done. We have got a long way to go. And we can say exactly the same about embryonic stem cells. The research here is only in its infancy. We know that when embryonic stem cells are taken from rat embryos and transplanted and grown and put into other rats they can form tumours. They can actually develop in an uncontrolled way. That is one of the major problems with the idea of trying to use embryonic stem cells for brain diseases. We do not understand the development, and that is why I said we are long way from using embryonic stem cells in any wholesale way for really curing diseases. Adult stem cells, because they exist in the body, they are dividing in ways that obviously are very useful but in many ways they do not fulfill the purpose either. So scientifically we are in our infancy. I certainly could not endorse the claims you have made that adult stem cells have this cure for 70 diseases. I just wish I was in that position.

??: I just want to know why we are even bothering to discuss this, because if you are going to kill a foetus at 12 weeks what is wrong with using cells from a few days old? It seems to me if you are going to stop embryonic cell research you are going to have to stop abortion.

Mark Henaghan: That is an argument used very strongly in lots of literature that we have moved to that point, and that it would be inconsistent to go in another direction.

??: How can knowledge be banned?

Sylvia Rumball: I can only endorse what Mark has said that consistency across a variety of policy areas – and Mark sketched those out – is certainly an important consideration for us to take into account. Of course it is not the only consideration, but it is certainly one of the ones. In our discussion document we would certainly draw that thread out, along with a lot of other threads. It is something to be noted.

Ruth Fitzgerald: In terms of knowledge being banned, it always depends on how the knowledge is applied. The splitting of the atom, the development of nuclear fusion, and so on – some applications are incredibly beneficial; others are incredibly destructive. It is how it is used and applied that is absolutely critical.

Brian Quinn: A question for Professor Faull. I think you very significantly early in your talk spoke of our true birthday as the time when we were formed as a zygote as a result of the union of the sperm and the ovum. I am wondering what exactly you mean, why you said that, in view of the fact that later in your talk you justified certain opportunities to experiment with embryos. If it is a fact that conception is truly my birthday does it mean that I am truly human from that point of view, or what does it mean?

Ruth Fitzgerald: It is your birthday. That is when a process was started for the development. It does not necessarily follow that therefore every ongoing step in that development – I mean, we have laws that in fact provide for abortions. You cannot turn the definition of “life” around in that way. It is much more complex than that. If the blastocysts are going to be destroyed, is that OK?

Brian Quinn: [Inaudible two or three words.]

Ruth Fitzgerald: Everyone is entitled to that viewpoint, but I would see it differently.

Linda Clark: And I guess Ruth you would. In a way that was part of the point of your address – that different cultures at different times make different definitions of when personhood begins.

Ruth Fitzgerald: Yes, and one of the ways that is popular at the moment and is sort of a dominant view is a very polarised understanding of human life – that you must assign life to a certain point. And once the debate or discussion has become very polarised around those two positions it is really difficult to talk together about what you might do in the murky circumstances of life that we often find ourselves to be in, particularly around reproduction. It tends to stifle conversations and give us no space where we might try to explore makeshift strategies that we could work with for a little while and perhaps reflect on what knowledge we have gained from working with that makeshift situation, and then make some longer-lasting decisions about what we might do.

??: For Dr Fitzgerald, continuing on from what you have just been saying. We had really interesting cross-cultural examples of what “personhood” meant in Ecuador and in Brazil. As an anthropologist what do you consider that “personhood” means in the New Zealand context?

Ruth Fitzgerald: I think that we have a wide demographic basis here in New Zealand so I would be extremely reluctant to say that we have one definition. That is why I think that a meeting like this is so extremely important, so that we can respectfully listen to a wide variety of views on what personhood would be. I think that any decisions we make about this really must reflect the group of us who live now in New Zealand. We are making respectful acknowledgement of tangata whenua. We are also acknowledging the people of the Treaty and our diverse positions that we come from as well. In conversations between all of these parties we may come up with something that is very useful, but I am sure it is not going to be a clear-cut decision. It is going to be one of these murky, contested processional ideas.

??: Kia ora. One of the things I would like to comment on is the legal definition in the HART Act. It again reduces people to individualism. It doesn’t give tangata whenua or other ways of looking at human societies a chance. So we have got the bit tacked on about we have to be aware of how Maori would think about this, but they are not included in the definition. So of course it is going to be tacked on. The other thing that I wanted to say was about the expectations of this research. Already our society has expectations about what medicine can do that are so hugely out of all reality, and now we are bringing in these other things about what stem cells may or may not be able to do and in what form they should be used – foetus, embryo, zygote, adult – and they are going to be [inaudible word] again, and I have a worry about the expectations of what people think they are going to be able to do with them. We are not even crawling, let alone walking, towards the end of this. The expectation that I would like us to be thinking about is what we want to come from this about people. How do we see people? Are they really going to be valued? Are people really going to be nurtured by this, or is it just going to be used by medicine again to do what they want to do and by people who want to exploit the needs of people who have problems?

Linda Clark: Let’s divide those into the two points. First, the legal point.

Mark Henaghan: On the legal point, I agree exactly with what you said, and Marewa touched on it in her very eloquent address earlier. It is a frustration, if you are coming from a Maori point of view, that in many parts of legislation the key substantive part, which is the legal definition, is often a Eurocentric definition, in this case. And then the process becomes Maori, but the process is very hard because you are having to apply a definition that is not something that would be part of your own way of seeing it. That is something we have not dealt with very well in legislation in New Zealand. I see it in family law legislation all the time. The substantive principles are written one way, and in the process it says, “Well we will involve Maori”, but being involved in applying principles that are, not alien, but are not quite your principles is not the same thing. I think Marewa would identify with that. Maybe the definition could be relooked at in a way that would take into account terminology and phraseology that Maori would be more comfortable with.

Marewa Glover: Kia ora. You raise a good point, and I was thinking about how can I talk about the collective versus the individual, and that how society used to be structured was around the collective good and the individual was served that good. That is why I said that it is really up to the iwi to decide, and then, if there was a whanau or hapu who did have a particular disease that stem cell research potentially could give them some answers for and maybe result in some prevention, it is really up to them to decide if they want to use or participate, if this is going to benefit them and if they would use their own embryos towards that end. The problem comes when you have an individual like myself who goes through, say, the IVF process and we have no access to what Maori or our hapu or iwi think about this or what the tikanga is because of that society and that collectivism having broken down. So, coming back to the Treaty, we need ways of encouraging and empowering, paying for Maori to get together and hui on these topics. And it is hard when there are so many other issues on the agenda.

Mark Henaghan: Legal definitions tend to come in only in situations where we think it is important to have one and we can’t agree. For example, we do not have a legal definition, thank God, of “fun”. Imagine Parliament defining what fun was and when you can have it and when you can’t have it. We don’t think that is important to put into legislation. But, for some reason or another, we think an embryo should go in there, and, once it does go in, the law doesn’t have any magic to appeal to every point of view in society. Sometimes one solution is to let individuals make their own definitions. If it does make a definition it is drawing a legal line in the sand, not necessarily consistent with a moral line because law and morals do not have to be consistent in that sense. But if you have a disagreement over an important matter the law comes in as a way of saying, “This is what we are going to work with from now on.” It is never going to be perfect; it is never going to satisfy everyone’s needs.

Linda Clark: The other point raised was the point about harnessing expectation about the potential for the research. Sylvia, you must, in a way, come up against that all the time, do you? Richard Faull touched on it in his address, this question that maybe in part the media is responsible for this, but the idea that around the corner is this miracle cure out of this research is such a romantic and attractive idea and wouldn’t it be nice.

Sylvia Rumball: I agree that there can be a lot of raised expectations for the outcome of research. I guess in ACART we are – or hope we are going to be - pretty measured about the way in which we present both the benefits of research, which Richard has been speaking of, and also the possible harms of research. That is the weighing-up that we must all do. I am concerned that very rapidly, I think, we start to equate the whole issue of embryo research to stem cell research. I think that is a pity. Stem cell research is one kind of embryo research that could take place. But, as I briefly said, there are a number of other areas where embryo research can be of great value but that do not involve the use of stem cells. I think the media have already made it a one-on-one equation that all embryo research equals stem cell research. I want to lift the game a little bit and say that most certainly there is one kind of research that uses embryos but there are other kinds of research, and we would like you to think about all those kinds of research that can be used and start to think, “Is this something that you find acceptable”, and weigh up the benefits of that research versus what you may see as the harms from that.

Linda Clark: In terms of the potential source of embryos, I urge you all to go onto the Bioethics Council website, which is www.bioethics.org.nz, and on there they have a link to relevant articles from the worldwide media. There is a terrific article from the American magazine Mother Jones, and in that article it says that in the United States alone there are 400,000 embryos currently on ice. Does anyone know how many embryos we have on ice in New Zealand?

Mark Henaghan: I read a report recently that between Australia and New Zealand there was 100,000.

Linda Clark: So these are embryos created for the purpose of IVF that are not collected.

Sylvia Rumball: Yes. I think may be of the order of 10,000 I have heard, but I think it is hard to count them. The HART Act most certainly says that those embryos cannot be kept indefinitely. It was put into the Act that there is a lifetime of 10 years given, and after that they will have to be destroyed. So we do have to think very carefully. We have IVF in New Zealand, therefore we have surplus IVF embryos. One of the questions we have to think carefully about is whether it is proper to give the parents of those embryos the option of donating them to research before they reach that 10-year deadline when they would have to be destroyed anyway.

Linda Clark: I guess there is the potential for the number on ice to grow as IVF success rates get higher. One of the things they are talking about at Fertility Associates – one of the biggest providers of IVF services – is putting back only one embryo at a time now because their strike rate of successful pregnancies is getting higher and higher. The potential then is that you will have even more embryos just going to waste.

Sylvia Rumball: That is right. Again this is an improvement in fertility treatment and a recognition of the problems that are created when more than one embryo has been replaced and the fact that with multiple pregnancies there are more difficulties and the outcomes are often not as good. Therefore New Zealand, as in many other countries, with the improvement of techniques has moved to saying that as a policy only one embryo will be transferred. Over the age of 35 another decision can be made because there are other factors to take into account such that people might be getting into their last chances. But under 35 the policy is that it is a single embryo transfer. This means that, typically, several embryos are created in the process because you don’t know that they are all going to be suitable for implantation. If you are lucky enough to have ended up with several embryos, all of which were suitable for implantation, then you are going to have some that are over and you will ask to have them cryo preserved. Then, of course, all those parents must face up to the question of how large a family do they want. Many of them are left with surplus embryos that they have decided they do not wish to have implanted, so decisions have to be made. It is interesting that the HART Act has made it quite clear that those embryos will have to be destroyed after 10 years.

John Klinesman: It is a statement as much as a question. I am intrigued by the numerous times people have referred to the destruction of embryos, and I accept that the HART Act specifies that they cannot be stored for longer than 10 years. From where I sit there is a moral difference, an ethical difference, between destroying embryos and allowing them to die. I think there is a moral assumption built into the term “destroying embryos”. We may need to let them die, but there is a difference between letting them die and destroying them. I don’t know if anyone wants to comment on that.

Ruth Fitzgerald:    In my own research embryologists have been at pains to tell me that many of these stored embryos are actually not viable in the sense that they are no longer living even though they are frozen. They can’t be thawed and implanted, nor would anybody wish to do so, after such a long period in preservation.

Mark Henaghan: The wording of the Act actually says – and you are right that it does not use the word “destroy” – “no person may keep a human embryo for a period of more than 10 years”. It does not say whether it is to be destroyed or whether it is to be let die, as you pointed out. It does not use that word in the Act.

Sylvia Rumball: I accept that point.

Linda Clark: Thank you very much for your very intelligent concentration this evening. These are complicated subjects, and we have covered the gamut of them. To say some final words this evening, and to send us on our way, Dr Martin Wilkinson, who is Acting Chairman of the Bioethics Council.

Martin Wilkinson:    Good evening. Thank you all for coming. Thank you to our speakers. As you can see, this is a tricky problem. At most of the seminars I go to the closing speaker manifestly abuses his position by using the time he has got, which is supposed to be merely wrapping up, to make endless rambling points of his own. I don’t see why I should be any exception, having sat through this! So what I am now going to do in about a minute or so is, I hope, break the topic down into two questions in what is intended to be a strictly neutral kind of way – that is to say, it is supposed to beg no question one way or the other on the merits of embryo research and so forth. Personally I find this a helpful way of thinking about it.

The first is the question about the rights and wrongs of embryo research where here one’s religious views might feed in, one’s spiritual views, one’s cultural views, one’s ethical views and so forth, which could be secular or from an organised religion, or whatever, to do with the status of the embryo – whether in one’s own view it counts as a fully fledged person, a clump of cells, or any of any number of range of views in between. That is one kind of view, and I think that this, on the whole, is largely what the panelists have concentrated on in giving us a sense of what the options are, including many that we will not have thought about before ourselves – at least for me, I did not even know about views in Ecuador, for instance. That is one type of question – first of all, what are the rights and wrongs of embryo research – for ourselves, not anything with an obvious answer.

The second question is this. “OK, well this is my view, but of course plenty of other people don’t agree with me - and I think reasonably don’t agree, as well.” I think they are wrong, because I believe my own views. If I didn’t think they were right I wouldn’t believe them. They believe theirs. But we recognise we live not in a monoculture. So this is the next question. Given that there are so many different, fundamental views about this, how then is policy and law supposed to be made? Professor Henaghan mentioned these problems without, I made add, solving them at all! I think it is wholly original on his part because goodness knows what the answer to that one is, either.

Anyway, these are some of the things, amongst others that the Bioethics Council is going to be grappling with. No promise of success, but we will do our best. This is clearly something that many people are interested in. Tricky though the questions are, and impossible though it might be for us to be sure we ever got the right answer, we can at least hope to make some sort of progress in getting better answers, and an evening like this, in which we can hear the views of each other – not just the panelists but those people who put their views forward in questions – is a way of making progress in this.

Having finished on this optimistic note, and passing over the rude remarks about English sexual practices and so forth from Professor Henaghan, I do now want to thank the panelists. We have a small gift for them. We thought long and hard about the kind of things we would like if we were in their position, and we got them that. You don’t have to either open it or drink it now!

I would like to finish by thanking you, and I am sure you and I would like to finish by thanking our panelists and our firm but fair Chair. Thank you very much.

Linda Clark: Thank you everybody. Have a safe journey home, and I do recommend www.bioethics.org.nz.

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