Human Assisted Reproductive Technology Bill

The question is that clauses 1 and 2 stand part. There will be one debate and two votes.

I am grateful for the opportunity to speak on the title and commencement of the Human Assisted Reproductive Technology Bill, which I believe has the very same name as the bill introduced by Dianne Yates back in 1996. In my view it is quite appropriate that that name remain. Dianne Yates has certainly shown extraordinary perseverance over the years. Although in 1998 the Government of the time had a bill called the Assisted Human Reproduction Bill, it seems to me only fitting that the title of this bill, which has been ushered through for 8 long years and has finally come to fruition, should give the sense of what the bill is about—and, fairly and squarely, it is about human assisted reproductive technology.

I think it is worthwhile mentioning—while strictly speaking to the title, of course—that it was in 1979 that Steptoe and Edwards presided over the first test-tube baby, which really heralded this new age of reproductive technology. It was a particularly fascinating procedure for a variety of reasons. Firstly, here was a provincial gynaecologist teaming up with a scientist from Cambridge. The provincial gynaecologist had wonderful technical knowledge and a view of the concept of retrieving eggs and sperm, but did not have the expertise to know how they could be fertilised, incubated, then put back into the uterus successfully. It was the scientist Robert Edwards, who had gained tremendous experience of tissue culture over many years, and had experience in animals as well, who knew how that might take place. It was a momentous occasion when it did take place, because it opened up a totally new world of assisted reproductive technology. Prior to that, literally millions of couples right around the world had no hope that they might be able to have their own biological babies.

I remember, 3 years later, going to a conference in Melbourne—the Asian and Oceanic Congress of Obstetrics and Gynaecology—where, much to my amazement, 99 percent of the deliberations were on that exciting new reproductive technology. There was one paper given by the Indians that was on human sterilisation. I marvelled at the thought that the Indian subcontinent, which had doubled its population—reaching towards a billion—from 1947 to that time in 1979, had enormous problems of population control, and needed to have good contraceptive techniques, and, on the other hand, the Asian and Oceanic group of reproductive experts were totally absorbed with that amazing new technology, which, at the time, had given rise to fewer than something like 15 or 20 births.

Since then, that technology has adapted through the years into many different forms and shapes, so that now we have to think of the mind-boggling possibilities that could occur in the next 20 years or so. For that reason, the title is absolutely appropriate, because all of them involve assisted reproductive technology. What is extraordinary is that we have seen the debate in the United States about stem cell research and the possibilities there, but when we take the next step to the genetic manipulations that could take place, clearly, there will arise a great, new brave world.

I will take a brief call on clauses 1 and 2. Although I understand how tidy and convenient the title of this bill is—it rolls off the tongue; it is the “HART” bill—in many ways I think the original bill proposed by Dianne Yates would have fitted this description. I do not believe that the bill before us now is described adequately by this title. This bill is now about the handling of all reproductive material outside the body, and covers way more than just the assistance given to people who require assistance with reproduction. It also covers the use of gametes and embryos for research purposes, and I certainly do not think that “human assisted reproductive technology” in any way alludes to the fact that a huge amount of research is now covered by this bill—procedures that will not necessarily impinge on a woman giving birth to a child, but will certainly take us down some very interesting paths.

I think a better title—if we were prepared to move away from our clever HART acronym—would be the “Human Assisted Reproductive and Research Technology Bill”. I guess we could say “HARRT” and put a bit of a roll on the “r”, which would please our southerners! I think the title should be changed to reflect what will be at least 50 percent of the work covered by this bill, which is the work of medical research. Certainly, the title gives no indication that that aspect of the work is covered.

The other matter I want to mention is the commencement date. It is rather interesting that a few provisions of the bill come into force on the date of the royal assent, and that for some others, there is a 9-month phase-in period. I understand that it is quite common in law to have a phase-in period for provisions of an Act. It is rather interesting to refer back to Part 4, where we find clause 75: “Director-General of Health to be advisory committee pending its establishment”. It kind of makes sense when one realises that those guidelines I was talking about earlier this evening—the consultation document for the pre-implementation genetic diagnosis procedures—obviously will not go to the committee. They will probably be processed by the Director-General of Health very quickly—in the next few months.

I think we must understand that a lot will happen in that 9-month phase-in commencement period. It will not be an inactive time. There are technologies waiting in the wings to be processed, and despite the fact that there is a 9-month delay, things will be under way very quickly. I continue to have some concerns. It is interesting, and it is a bit of a challenge to the Greens—it is never too late to change one’s mind. I was talking this evening to a gentleman from the UK. I was explaining the legislation we are working on tonight in the Chamber. His comment to me was: “Oh, I bet the Greens are opposing that.” The Greens have taken a very active stand internationally on this area. He was quite shocked to hear that the Green Party in New Zealand is supporting this bill right the way through. He said that was quite out of step with what has happened with that party internationally. Green members present may want to relay that to their colleagues so that they can reconsider the position they are taking on this bill in the third reading.

I rise on behalf of New Zealand First to speak to clauses 1 and 2, “Title”, and “Commencement”. The title of this bill is exactly as it should be. It is clear, short, specific, and concise. There can be no misunderstanding as to what the bill is about. Any title should convey the essence and the substance of the legislation, and this title really does. The bill meets those criteria.

When we look at the title of the Government bill, introduced back in 1996—the Assisted Human Reproduction Bill—I say that those specifications would be hard to meet. Really, the Assisted Human Reproduction Bill was about technology way back in 1998, so the word “technology” did need to be included, and even now it more completely covers what actually occurs in this area. I would say, too, that that technology has provided many couples with the children that they had previously been unable to have and have desperately wanted.

This bill has been a very long time in getting to this point, and we are pleased to see that it is making progress through the House today. We need to remember that fertility clinics are professional bodies. Tonight, with some of the arguments and debate that we have heard, I was beginning to wonder. But we need to realise that fertility clinics are professional bodies, that they do have strict standards, and that they do have quality requirements. After all, the bottom line is that they are dealing with humans. Humans are unique. We are special. We need to have the very best legislation that we can in this area, and this legislation is a good start.

I know that fertility clinics have worked in their field for over 20 years, and we read in newspapers about only the very major occurrences. Nothing has happened with fertility clinics that really casts doubt on those bodies. When I look at the commencement date I can understand why there is a 9-month phase-in to set up this particular legislation. When all is said and done, we need to have a ministerial advisory committee and an ethics committee set up, and in this legislation it is very clearly outlined and set out as to what the requirements of those committees will be. Clauses 1 and 2 firmly cover what the bill is about. New Zealand First supports them.

First of all, for the benefit of the United Future member and anyone who may have listened to her speech, I reiterate that the Green Party has huge concerns with this bill. We are supporting it only because it prohibits the worst excesses of artificial reproduction—namely, genetic engineering, cloning of human beings, and sex selection for social reasons—and because the weak regime it sets in place is better than the totally unregulated, free-market approach that we have at present. That is the only reason we are voting in favour of the bill.

Basically, proponents of human assisted reproductive technology, such as Dr Paul Hutchinson, paint a rosy picture of a future where these technologies can be used to overcome the limitations of the human body and, in particular, to overcome the limitations of infertility. But the very same technologies that can be used, for example, to cure a child of cystic fibrosis or to avoid such a child being born, can equally be used to threaten human dignity and human rights, to eliminate imperfections, to create perfect persons and a perfect race—in other words, to be used for eugenic purposes. The Green Party believes that we must draw a line to protect future generations from growing up as laboratory experiments.

There are huge controversial issues in the area of assisted human reproduction, such as: where does one draw the line between what is an acceptable and what is an unacceptable use of pre-birth selection; who decides what genetic defects are to be allowed to be eliminated from the human population through embryo selection and pre-implantation, genetic diagnosis, etc; and where does it stop, given the pressures from consumers? How does our society decide what characteristics are permissible in offspring, and where does one draw a line, for example, between cystic fibrosis, Down’s syndrome, spina bifida, and coronary heart disease?

Regrettably, those profound issues will not be decided by Parliament, because in this legislation we have delegated all those profound decisions to an unelected and unaccountable committee. It is ironic that in the next bill, Parliament will decide on whether we can dock dogs’ tails, but in this bill, we are abdicating our right to decide on profound issues such as pre-implantation genetic diagnosis.

Instead, guidelines were issued a couple of weeks ago on the issues I raised. Basically, those guidelines state that it is not the responsibility of Parliament to decide where we draw the line between cystic fibrosis, Down’s syndrome, coronary heart disease, or whatever. No, no, that is left to the responsibility of the fertility clinics, which the member from New Zealand First has so much confidence in. It is left for them to decide whether a disorder is likely to be serious in the offspring of a particular couple and, therefore, whether pre-implantation genetic diagnosis could be used. The clinics themselves will be making those very profound decisions. So it is quite extraordinary, and I do not think people realise it. The population will wake up and realise, down the track, what we are doing in passing this legislation and delegating those profound decisions to an unelected and unaccountable committee, and simply issuing guidelines rather than having any regulations in the whole area.

People will wake up in the future. There will probably be a couple of scandals in a few years’ time, and I can predict that there will be amendments to this legislation to strengthen it and, at least, embody regulations, and to return it to the form that Dianne Yates’ member’s bill began with, with strict licensing and regulations. But it has been completely gutted and watered down. Now we have something that I believe we will live to regret, and everyone here needs to realise that members, in progressing this bill tonight, are abdicating their responsibility for those issues.

I want to address the title of the bill. It was originally based, as has been said, on the United Kingdom’s Human Fertilisation and Embryology Act of 1990. I want to explain that I deliberately chose the term “Human Assisted Reproductive Technology” for the title of the bill. The bill that followed it in 1998 in the name of Doug Graham, the then Minister of Justice, was the Assisted Human Reproduction Bill. I deliberately put the word “human” before the word “assisted” even though it should be “Assisted Human Reproductive Technology”, strictly speaking. I thought it made it easier to say—it is easier to say “HART”, because we know that a huge title like that is very difficult to talk about—but I also thought that it is important that the word “human” comes first. We are talking about human beings, what it means to be human, and what it will mean to be human in the future, when we are talking about anything to do with gene technology, reproductive technology, and human beings. That is why I deliberately put the word “human” first.

I also mention that in the bill as introduced, there were more restrictions around both research and consent. As Sue Kedgley mentioned, the original British bill had greater controls and, in the schedules, greater emphasis both on what happens to embryos in regard to research and on the consent of the people who donate.

I rise to speak to clauses 1 and 2 of this Human Assisted Reproductive Technology Bill and to say in respect of the title that I would have been more in favour of retaining the “Assisted Human Reproduction and Technology” title by which it is commonly known in the area of assisted human reproduction. I guess that is a small matter in the final analysis, and I suppose “HART” does roll off the tongue. There is always a danger, I think, of reducing something to its initials though, in that when we talk about the “HART Bill” many people have absolutely no idea what we are talking about. However, if we have to say the name in full, it does give the real meaning to the bill.

ACT New Zealand members, as we have said in the other parts of this bill, will have a split vote. Some of our members think that there is no need for a legislative framework around this. I am one of the two people in the ACT party who is supporting the bill, and I am very pleased, in fact, with the outcome that we have arrived at.

I think that the Green member’s criticism of Dr Paul Hutchison of the National Party for painting a rosy picture was really quite a sad criticism, because there are many infertile couples, both in New Zealand and around the world, whose lives have been greatly enriched by the addition of a child, or children, to their families. Without the assistance of human reproductive technology, they would have had no hope of ever having children. It does sadden me when I hear criticisms like that.

Another point that has been raised is that there should have been very strict legislative regulation around the provisions of the bill. I was delighted to see we had in fact opted for the guidelines. I think in reproductive technology, and in the area of research, it is very important to have a good deal of flexibility in a field that is seeing progress running at a huge pace. There is nothing worse, particularly in the area of reproduction, than something being held up, and perhaps never being able to be retrieved, when quick and wise decisions cannot be made in a timely manner. Several examples were given to us, as we progressed through the bill, where decisions could not have been made in a timely manner if some of these provisions were not put in place.

I think the biggest advantage of this bill is that the very messy procedure of having to progress issues through a large number of ethics committees can now be avoided. There will be the ministerial advisory committee, which set up the guidelines, and one ethics committee, rather than having to go to several committees around the country to have decisions made in different areas. Those decisions can now be made through one ethics committee, and that, too, will assist the timely progress of decisions through the bill.

Coming back to the title just for a moment, I agree with the United Future member that the title refers to only half of the bill. The bill is about reproductive technology, but it is also about research—the research provisions around reproductive technology. The research deserves to be acknowledged, because we would not have reproductive technology if it were not for the fact that a great deal of research preceded it. I would have liked to see some acknowledgment in the title that the bill is about research in many respects, and is heavily dependent on it. Again, I come back to the fact that “HART” might roll neatly off the tongue, but the whole point of having a title is to give a true reflection of what a bill is about. The research component is extraordinarily important.

I want to make a final comment on fertility clinics, which have been criticised heavily in the course of this entire debate. I think the fertility clinics that we have in New Zealand have demonstrated a good deal of integrity. We heard Dr Paul Hutchison, who knows a great deal about this area, say that there have been no major problems in the 20 years that fertility clinics have existed in New Zealand. They have existed with a great deal of integrity and have taken very seriously the professional self-regulation that they have always enjoyed. There is no reason to suggest this integrity will not continue into the future.

I think the title is somewhat misleading because this bill is largely about the decision-making process and not so much about the technology itself. Despite what the last speaker said, there has been almost no debate on how this bill might impact on research. That is why I think we will find ourselves back here in Parliament, not next year but before too long, dealing with issues that deserve wide public debate.

This bill is really the “Human Assisted Reproductive Process Bill”, and it is a process that seems to regard any issue to do with human-assisted reproduction as somehow the province of the people who carry out the activity, and of a couple of committees who watch over it. I think that that is a bizarre notion, and that is why I have opposed this bill, right through.

I want to take just one issue that comes up, which was barely discussed in the Committee stage, and that is the use in schedule 1, the list of banned processes, of the term “for reproductive purposes,”. Schedule 1(2) states we are not allowed to: “Artificially form, for reproductive purposes, a hybrid embryo.” That means, of course, that we are allowed to do it for any other purpose. Does the public of New Zealand realise that Parliament is about to pass legislation that not just implies but, in terms of the debate, specifically allows the formation of hybrid embryos for any purpose other than reproduction? Scientific interest or research, of course, is the catch-all for doing it. It is the same with cloning. We are not allowed to form artificially, for reproductive purposes, a cloned embryo, but we are allowed to form a cloned embryo for research purposes.

That means we are having no public discussion about an issue that is defined by the mind of the scientist—that is, by his or her intent: was it intended for this, or for something else? That is the test, the only test, and I do not believe that those decisions should be left to a couple of ministerially appointed committees. Of course, over a period of exposure to the high integrity of people who operate in fertility clinics, scientists, ethical journals, and advisers, those committees become entirely used to these ideas, but the general public does not.

I do not believe that the general public supports scientific processes in New Zealand that form cloned embryos for research purposes. I do not believe that the New Zealand public supports the production of hybrid embryos—that is, animal-human hybrids—for research purposes. At the moment maybe that process is not happening, but when the bill is passed, Parliament by implication will have given approval to it. I think that it is a matter that should be debated by the public.

We have heard a couple of speakers talk about the timeliness of decisions on this matter. This Parliament passed the Hazardous Substances and New Organisms Act, which means we have more hurdles for approving a common chemical that has been used for 25 years in New Zealand than we have for hybrid embryo farming. Because of the rules that we have made, it is harder to get approval for widely used, well-known, almost non-toxic chemicals, than it is to farm embryos for cloning research. In that respect I am conservative, but I believe that this legislation is not conservative enough.

The legislation is no longer about just making sure infertile couples can have babies—that is accepted practice. It is about a whole new world around which there is emotion and hysteria. We have only to look at the US presidential debate to see the bizarre claims made, by someone who wants to lead the free world, about how stem cell research will fix everything—when there is not a hope of that actually happening in the next few decades.

So there is no doubt at all that these issues have much wider resonance than a ministerially appointed ethics committee. That is not to question the integrity of those people; it is just that these issues deserve wider public debate.

I welcome the opportunity to take a call on clauses 1 and 2 of the Human Assisted Reproductive Technology Bill, and on behalf of New Zealand First I acknowledge the great amount of work done by Dianne Yates to get the bill to this stage. It is obvious that she has spent a lot of time and done a lot of work on the bill since 1996, and that she has led a very good select committee on it, as well. I congratulate her. I also acknowledge the work of my colleague in New Zealand First, Barbara Stewart, who has spent a lot of time on this bill, as well.

I would like to touch on a couple of points that I consider to be very important. They relate to the title and to timings. One of the main issues I have with the bill that I would like to raise at this point is the information about donors, embryos, etc. The information recorded by the provider does not have to be turned over to anybody for 50 years. The information has to be retained by that provider for 50 years or, if that provider ceases to be a provider and there are no alternatives, it has to be handed over to the registrar.

That information contains some very important facts and aspects about the donor. It includes the donor’s name, gender, address, and place and country of birth. It also records the donor’s height, colour of hair and eyes, ethnicity, whānau and hapū.

It also records medical history, which is where if information is withheld for 50 years it can have devastating effects. There may be a situation where genetic flaws in the embryos or cells provided have not been picked up, because not all defects carry over from one generation to the next. They often skip one, two, or three generations, then reappear. That is where the problem arises.

If there is a donor who in turn becomes a donor, that information is hidden; it will not become available until 50 years is up. If the child of the donor dies at an early age, say after donating cells for another process, then I am not sure whether the genetic information can become available to the next generation formed from the donated cell of the donor. That is something I would like the member to take a call on, because I would like to hear that that information is provided.

For example, it is very serious when something like cystic fibrosis appears within a family. It may not appear for several generations, but then it can reoccur. Depending on the circumstances of donor parents, the supposed information supplied has to provide information about grandparents, but if the circumstances concern the donated cells of a donor, the grandparents are not known at that point because the information is kept hidden for 50 years.

There is no obligation to provide that information for 50 years, therefore it can fall through the cracks and never be known. I would hate that to be the case. I am an avid family historian and that information is of interest to historians and family historians. But, more important, it is vital information when genetic defects start appearing that cannot be traced back to a family line or the original donors.

Once again, while sticking strictly to the title of this bill—the Human Assisted Reproductive Technology Bill of 1996—I will stray a little, like my other colleagues. I want to follow up on the point that Dianne Yates made about this bill being modelled on the UK Human Fertilisation and Embryology Act 1990, or her original bill, and she lamented that there had been departures from that. It is important to point out that just recently Lord Winston has said that that human embryology legislation is in need of quite radical revision.

In my view, one of the strengths of this bill is that it has done a very important balancing act in relation to the extremes of views we have heard. On the one hand, the Greens talked of the dangers of eugenics being a logical conclusion, and, on the other hand, we have heard from Stephen Franks and ACT, who believe that any regulation in this field is absolutely inappropriate. My colleague Bill English talked about schedule 1 and the implication that while there is a list of procedures that are prohibited if they are for reproductive purposes, that automatically implies they would be legal for non-reproductive purposes. That is inappropriate, and in my view it is pretty far-fetched. He referred to procedures such as artificially forming, for non-reproductive purposes, a hybrid embryo. We do have within this legislation both the ministerial advisory committee and the ethics committee, which can go through a considerably arduous process. Nevertheless, if indeed the recommendation is to ban or to have an amendment to the bill, there is no reason whatsoever that action cannot be recommended to the Minister to take up.

It is important to point out that too much regulation or inflexibility could cause huge setbacks for personkind. I think specifically of what occurred with intracytoplasmic sperm injection in the 1990s. It is a technique introduced into New Zealand for which, as has been pointed out many times, specific regulations have not been in existence. It has opened the way in dealing with male infertility in New Zealand by means of a technique, whereby a single sperm is injected into the nucleus of an ovum. The remarkable thing about this technique was that initially the sperm was injected just below the surface of the cytoplasm. The resulting fertility was in the order of 5 or 6 percent. But by serendipity some of the workers in that area started injecting into the nucleus and, remarkably, the fertility rates changed from 5 percent to 70 percent, and over. That opened the way for a huge revolution and hope for many tens of thousands of men and couples right around the world. This was done without any specific regulation, and has proven to be an absolutely safe procedure, though one might think at first glance that putting a needle into a nucleus and injecting a sperm into it could hugely disrupt the genetics of the future being.

The point that I wanted to make was that it is very, very important not to be too rigid and to have the flexibility that I believe the framework of this Human Assisted Reproductive Technology Bill has, indeed, made possible.