Human Assisted Reproductive Technology Bill
The question now is that Part 2, clauses 8 to 41 and including debate on schedule 1, stand part.
Part 2 has some of the most important aspects of this bill. Not only does it deal with the area of prohibited and regulated activities, it also deals with the very important ministerial advisory committee and the ethics committee. Mr Chairperson, might I say at this stage that it would be helpful, because of the wideness of this part, to be able to have multiple calls, if at all possible.
I start by once again making the point that there have been no specific regulations governing this area of reproductive technology in New Zealand, but there have been a variety of bills. Over the last 20 to 30 years the newer reproductive technologies have become much more prominent, and, at the same time, the ability to adopt children has become almost negligible in New Zealand. Consequently, there are significant numbers of men and women in New Zealand who, more and more, wish to take advantage of those technologies. To suggest there is no harm is absolutely inappropriate. But it is important to realise there is such a spectrum of procedures available. There are not just complicated ones like in vitro fertilisation. It varies from simply allowing the environment of the female genital tract to be marginally changed to allow conception to occur, to much more complicated procedures that carry with them excessive harm. We have had cases in New Zealand of mortality occurring from ovulation stimulation associated with in vitro fertilisation.
So there are indeed examples in this country of mortality. If one goes through the list in schedule 1, for instance, one can see the prohibition on cloning embryos. We in this country know from animal reproduction, and from the work done with Dolly the sheep in Britain, that there are higher morbidity, mortality, and ageing problems associated with cloned animals. There is no doubt that at this stage of events it would be unwise to embark on those procedures with humans. It is right and proper that there is such a list.
I also point out that clause 8 in schedule 1 includes a prohibition against implanting into a human being a genetically modified gamete, human embryo, or hybrid embryo. Undoubtedly, there are provisions throughout this bill that deal with the area of genetic modification, and that is absolutely right and proper. However, this bill does not deal with the area of stem cell research. It will be addressed through the Human Tissue Act, but, once again, it is highly contentious.
We note that so many areas in the bill have a wide polarity of view about them. We are seeing right now the tremendous debate in the United States on stem cell research. On the one hand, President Bush has banned it except in very restricted circumstances, and, on the other hand, the presidential contender, Kerry, has promised $100 million of extra funding into stem cell research. There is no doubt that the spectrum of technologies involved engender with them a great polarity of view. That is why it has been so important to reach a practical balance. On the one hand, there are simple procedures for which it would be totally inappropriate to bring in amendments through Parliament every time.
I raise a point of order, Mr Chairperson. Just as a point of clarification, my colleague Dr Paul Hutchison indicated at the start of his contribution that he was keen to make more than one contribution to this part of the debate. In the first part of the Committee stage, the Government senior whip moved a closure motion. I seek your advice, Mr Chairperson, in respect of the convention. I believe that during a members’ day the matter is very much in members’ hands as to when a part in a debate comes to a conclusion. I would be interested in what the Deputy Leader of the House has to say. I just want to confirm with you that we will not be engaged in a time-based closure motion situation.
I thank the honourable member for drawing that to my attention. He will note that the senior whip has not put any more closure motions. In reality, the position is that it is in the hands of the chair of the Committee as to when a closure motion is accepted. He will also know that last time the speakers were given a good hearing, and I think it went very well.
I raise a point of order, Mr Chairperson. In the spirit of good communication, I can assure the member that, subject to the normal ability of any member to seek a closure motion if he or she feels the debate is deteriorating and to seek the decision of the chair, I do not think Government members are in any hurry to curtail this debate.
Part 2 and schedule 1 deal with some of the concerns I have heard people express in this Chamber. Schedule 1 clearly delineates those prohibited activities that will not be allowed to take place in New Zealand without resulting in 2 years’ imprisonment or a $200,000 fine. There are quite hefty penalties for anybody who attempts to break the law in respect of this legislation.
Some of the things we are debating tonight have to do with philosophy. The issues in this bill come back to the understanding of when life begins, to the whole concept from the past of test-tube babies, and to where we go in allowing the level of human assisted reproductive technology to develop in this country. The areas in schedule 1 that are prohibited are very clearly delineated. There was discussion on what would be an accepted activity, and about how new technologies being developed would be allowed on to the accepted activity list. Concerns were expressed about how Parliament would have scrutiny over new developments that there is doubt about.
Clause 10 refers to the ethics committee and states that human in vitro embryos can be kept for only 10 years. I think clause 10 gives us a really good example of how an ethics committee would work. It states that a gamete or embryo can be kept for a period of only 10 years, and that it would then be up to the ethics committee to make a decision whether to approve any longer period. Let us imagine a child of 13 who finds that she has ovarian cancer and who wants her eggs to be kept and stored. At the end of 10 years she would be only 23. That person may not have found a permanent partner in life and may not want to have a child at that time, so she would ask for ethics committee approval for the 10-year period to be extended. If she did not know about that time period, and the end of the 10-year period was coming up in a couple of months, there would have to be a fairly speedy process. We could not have a 2-year process for approval, because those eggs would be destroyed and that would be the end of her chance ever to have children. So we do need a process that can respond to such a situation.
Sitting suspended from 6 p.m. to 7.30 p.m.
Before the dinner break we were talking about the role of the ethics committee as well as the role of the ministerial advisory committee, as set out in Part 2. We are also considering schedule 1—“Prohibited Actions”. There are nine points clearly set out in this schedule, which state that artificially forming for reproductive purposes a hybrid embryo, implanting a cloned embryo, implanting an animal gamete or embryo into a human, and so on, are all prohibited. This legislation will have the power to give surety in these areas.
Another issue that was debated, and that will be restricted, is the sex selection of human embryos. A sex-linked genetic defect is a defence against the charge of breaking clause 11, which states the restrictions on sex selection of human embryos. So people cannot say that they want a girl or a boy and have an embryo selected on that basis. However, if there is a genetic disorder or disease that is passed on because of the sex of the child, then a child’s sex can be selected for that reason.
There will be only one ethics committee and that is appropriate because this is a very highly specialised area and there should be only one agency. The advisory committee, about which the Green Party has stated its concerns, will have eight to 12 members. They will be looking at the issues of donations of embryos, embryo splitting, gametes derived from dead people, informed consent, pre-implantation genetic analysis—that is, examining what the genetic code of an embryo may be before it is implanted, to ensure that it does not have defects—and importation and exportation of in vitro donated cells. When we start looking at some of these issues, we begin to realise the complexity of the issue that we have been debating. For example, if people who immigrate to this country have frozen embryos in another country, there has to be provision for them to be able to bring in those embryos if they want implantation at a later date. There may be a situation where a man has donated sperm and he still lives in a different country. If a woman has one child through the process of using the donated sperm and she may want to have another child with that same genetic inheritance, there has to be a way to be able to import or export in vitro donated cells. Gametes derived from someone who has died brought up a very interesting case in Britain where a woman wanted to use the sperm cells from her husband, who had been killed in an accident, to create a child. That was a hard-fought legal case.
These are all interesting ethical and procedural matters that the ministerial advisory committee will have to look at. They often arise from one specific case that may end up before the courts, and then worldwide attention is focused on that particular case to look at the moral and ethical dilemmas that are brought about by such a case.
The other thing we must remember about this bill is that although it has a certain jurisdiction, we also have the hazardous substances and new organisms legislation and the Medicines Act. The legislation overlaps to some degree concerning the use of therapies, such as somatic cell gene therapy and embryonic stem cell therapy used in genetic modification. There is an overlap that is somewhat different from that of other countries.
I turn to the status of the advisory committees. It will be an offence to go outside the guidelines. We heard the Hon Bill English’s concerns about the advisory committee and the Minister. The Minister is an elected representative of the country, who has been appointed to be in charge of health. He or she will have the responsibility, as an elected official, to look at the advice given by the ministerial advisory committee. It is a committee appointed by that Minister, or maybe by a former Minister. If there are concerns, then the Minister should seek further advice, either from the public to have a debate on these issues, or from the Ministry of Health. The Minister could even ask the select committee for an inquiry, or the legislation could be changed if he or she is unhappy with what may have happened, or have been proposed. The Minister of Health will be the person who will make those changes. It will be that person’s responsibility to decide what will change from being experimental to becoming a recognised procedure. Look back to the cloning of Dolly the sheep. When that occurred, around the world there was a call for legislation to try to prevent cloning, and that will happen with this legislation tonight.
💬 Stephen Franks: Why support it?
I am supporting this bill because it gives a clear way to regulate against the sorts of things that very few people, in this country would want to see. They would not want to see cloning and they would not want to see the genetic engineering of babies—they would not want to see that. But there needs to be a process whereby we can move forward.
I listened to that speech and thought it a very good example of the kind of well-meaning humbug we find so often when Parliament rushes to legislate in areas in which it understands nothing.
💬 Dr Paul Hutchison: 8 long years.
The rush was in introducing it. The reason it has not gone through is that parliamentarians, even though they would love to look busy in this area, realised that they do not have the faintest idea of what is happening. They do not know how to regulate this issue and do not know what the mischief is, but they still want to write rules. That is why it is a rush to legislate. The fact that they have not managed to get it through is slight evidence of a wee bit of humility, but no more—a tiny bit of humility. In Part 2 of the Human Assisted Reproductive Technology Bill the establishment is saying that it really wants to make rules, although it has not got a clue why. Here we ban the commercial supply of embryos. We ban paid surrogacy. If this bill was covering—
💬 Judy Turner: Are you for it?
I am absolutely in favour of paid surrogacy. A woman who goes through all of those months of pregnancy fully deserves to be paid for the time, the investment, the weariness, and all the other costs that relate to pregnancy. She should absolutely be paid for her surrogacy.
I cannot understand at all why New Zealanders should be prohibited from even seeing advertisements. What a fatuous bill! Under clause 15, the penalty will be 3 months in prison or a fine of $2,500, if someone’s Internet site shows that somewhere in the world one might be paid to hold an embryo—to be a mother for someone else. There have been wet nurses and nannies for generations, for centuries. In fact, the ruling classes have often wanted someone else to do all the hard work of child bearing. We now say that that is to be criminalised!
It will happen. New Zealanders will do it. They will go to the United States, China, or some Pacific Island country—somewhere where someone will carry a child for them—and they will pay the women handsomely. But this sanctimonious mob in this Parliament says: “Oh no, we think that’s awful. We’ll ban that.”
I know why there is an ACT party in this Parliament: because we are not bound by political correctness. We are not too scared to say it like it is. We stand up and ask why this measure is being put through. Why is clause 11 putting a legal restriction on sex selection of human embryos? Who is to say that New Zealand people will not do that anyway? It could easily be that shortly we will know exactly what environments in the womb or the uterus favour male sperm. It could easily be that shortly this matter will be right out of the hands of the politicians, and the people will be able to decide. Then we will have the real decision—the decision as to what we do if people consistently favour one gender over the other. We do not know which one it will be, but it is very likely that humans will work it out without the help of an all-wise, all-knowing, nanny Government. They will work out what to do if a sex imbalance emerges. We are watching that huge experiment happening in China right at this minute.
This Government says it will ban sex selection in New Zealand, but it knows that it cannot enforce that, and it knows that people will find excuses. It is interesting, as a lawyer, to consider the sorts of arguments that might be put to a court on exactly what is a genetic disorder or disease. There are many propensities that are gender related, and that people might argue they do not want their children to incur. I know, for example, that schizophrenia has a higher propensity in certain families than in others, and that it is gender related. Will that be an excuse? I suspect it will. I suspect that the unhappy, uncomfortable couple who are looking at a higher propensity to incur a certain disease will be able to walk around this restriction, in exactly the same way as people have walked around our anti-abortion law by pretending to find serious mental risk when they want to justify an abortion.
This measure is an exercise in futility. It is an exercise in smugness and sanctimony.
Well, I am not sure why Mr Franks is so exercised about this bill, because I think that—[Interruption] Mr Franks is implying that this bill sets stringent regulations on these various issues. If he looks at the fine print he will find that it does no such thing—that, in fact, some rather wiffly-waffly guidelines around these various things—[Interruption] Mr Chairperson, I seek your protection. I am unable to hear myself think because of the shouting in my right ear.
The CHAIRPERSON (Hon Clem Simich): I will protect the member.
The point is that far from having strict regulation, we will have instead some wiffly-waffly guidelines that will set policy in far-reaching areas—areas such as embryo splitting, and the derivation of gametes from deceased persons. We will actually have that unelected and unaccountable committee setting policy in areas that the ordinary New Zealander will have very, very strong views and feelings about. In fact, an unelected and unaccountable committee will be making those far-reaching decisions and setting guidelines—guidelines that if existing guidelines are any indication, will be extremely vague. So Mr Franks need not be worried. I think that most people will find a way around those guidelines. I suspect that most of the guidelines will not even be enforceable.
I want to mention that the Green Party has a couple of amendments to this part. One is to tighten up the rules around preimplantation genetic diagnosis, and to prevent it from being used to select embryos for reasons other than preventing serious genetic diseases or increasing the likelihood of implantation. We strongly support the use of embryo selection techniques, such as preimplantation genetic diagnosis, to help couples who carry genes for disorders such as Huntingdon’s disease, cystic fibrosis, and so forth. But we are strongly opposed to the use of that particular technology for social or eugenic purposes.
The problem is that in the way the bill is currently drafted, it could be used to allow people to select embryos for any other genetic characteristic except sex. Now, Mr Franks will not be worried about that, but I have an article here in which James Watson, a biologist who has been very involved in this area, stirred some controversy in the United States recently by saying that if a gene for homosexuality were discovered, a woman should be free to abort a foetus that carried it or to select such an embryo. That created something of an uproar, but the truth of the matter is that it would be left to that particular unelected and accountable committee to make far-reaching decisions such as that.
The National Ethics Committee on Assisted Human Reproduction put out some guidelines on preimplantation genetic diagnosis, and if anyone had concerns about the guidelines of the advisory committee, these guidelines from the ethics committee would enhance those concerns. They are not only extremely vague, but they set down few stipulations. They state: “Preimplantation genetic diagnosis for conditions that are not covered here can be approved on a case-by-case basis.” In other words, that committee is basically saying that it will be possible to use the technology to select desirable traits in off-spring and screen out undesirable traits, on a case-by-case basis—so it leaves it wide open. With our amendment, therefore, we want to make it absolutely clear that embryo selection techniques such as those can be used only to prevent serious genetic diseases or disorders, and that they cannot be used to improve athletic performance, or whatever.
I note that the United Kingdom has regulations around preimplantation genetic diagnosis, which once again, of course, are much, much tighter than ours. The UK allows only a very limited number of licensed clinics to use the technology, and then only for severe and life-threatening disorders.
New Zealand First is happy to support Part 2. We especially support the list of prohibited actions in clause 8, which states in subclause (1): “Every person commits an offence who takes an action described in Schedule 1.” Because of the great sensitivity here in relation to ethnic peoples, touching on the sanctity of birth and children, I speak on behalf of those people and say that this should be taken into consideration. New Zealand First is happy with the list of prohibited actions and supports it. We are pleased with the provisions that prohibit the genetic engineering of humans and the sex selection of embryos for any reason other than treating or preventing genetic disease. This is a sensitive topic. There are those of us who believe that a spirit of a person is chosen to be male or female even before it enters into this life. So we are very, very happy with the part of the bill that prohibits the genetic engineering of humans and the sex selection of embryos. This will be allowed only for treating or preventing genetic disease.
It is great to have a functions and ethics committee set out clearly. The committee will be held responsible for the activity allowed, for the laws and functions, and for the counsel and advice that might be given to the public. It holds a great responsibility towards the general public, towards humanity, and towards people who, through no fault of their own, are unable to have children of their own. They are people who are in a situation where they have to make serious decisions.
We believe that the number of people on the advisory committee may be too large. Between eight and 12 members would, I think, be sufficient in terms of control and keeping track of this legislation. There should be a member of the ethics committee on the advisory committee by right. Too many lay persons on an advisory committee may have a detrimental effect, in terms of the expertise already there. It is great to have the advisory committee guidelines made public. Because of the seriousness, sensitivity, and importance of this legislation, the public and the people it affects need to be advised of what is actually happening. We welcome the strengthened provisions for public involvement.
Other than that, when we look at the restrictions on sex selection of human embryos we notice that there is a penalty of up to 1 year’s jail and a fine of $100,000, or both, for breaches in this area. With the seriousness of this issue, I think the penalties should be extended a bit more. There are many who may be able to afford the $100,000, or even look at spending 1 year in prison—it would be all over with the flick of the fingers, and back to it again. Clause 11(2) states: “Every person commits an offence who contravenes this section and is liable on summary conviction to imprisonment for a term not exceeding 1 year or a fine not exceeding $100,000, or both.”
💬 Stephen Franks: Who’s the victim?
In this case, the people involved. They would not be victims because—[Interruption] The member from ACT has had his say. They have made that choice. They have made the decision to be put in that situation, and they know the responsibilities that go with it.
I to refer to comments made earlier by Mr Franks. He said that we do not need a framework, that society will work it out for itself, and that it will all come right in the wash. He cited the situation in China and said that although China now has a slight imbalance in its population due to sex selection, it will all clean up in the wash. When we look at the percentages in China, we see that the situation does not look too bad—until we look at the real figures. In the next 10 years, I say to Mr Franks, China will have 30 million males. There will not be enough females to partner them. I do not quite know how that will come out in the wash. That is the current situation due to sex selection in China.
I want to talk about some of the amendments I have put forward to Part 2. The first is to clause 9. Clause 9 provides for the ability for an embryo to be developed for 14 days. A very interesting bit of wording that has slipped into the clause refers to the fact that in counting those 14 days we exclude any day during which the development of the embryo is suspended. I have asked officials about this, and they thought my concerns were unfounded. However, I have done the maths and I still cannot figure out how else this can work. Assuming that the technology is developed whereby we can suspend development, start it again, and then suspend it again—and I am sure that at present no embryo could survive that repeated process, but we may yet develop the technology—then that means an embryo could start developing for one, two, three, or four days, and then, say, on day five have its development suspended. But day five does not have to be counted, because it is the day the action was suspended. So even though the embryo is 5 days old, it is called a 4-day-old embryo. Then it can be thawed—or whatever the process is—and the counting started again. Its development can then be further suspended, but the day on which that occurs does not have to be counted. That means that an embryo that is officially 14 days old has actually been developed beyond 14 days because of the exclusion provision in this clause. I propose that we eliminate the bracketed words in paragraphs (a) and (b) of clause 9(4). That would mean that we count 14 real days and if development is suspended on a given day, that day is still counted as a full day.
The next amendment I propose is to clause 11, “Restrictions on sex selection of human embryos”. It is a simple change to the heading of that clause about sex selection, so that we regulate sex selection using not just embryos but, of course, gametes, as we understand that sex selection can take place before an egg is fertilised.
💬 Stephen Franks: Ooh, you’re on to that!
We want to make sure, if we are to have some regulation around this, that we cover the full extent of the process.
Clause 33 is another where I would like to see the ability for the advisory committee to include a representative from the Office of the Commissioner for Children, that representative to be on the committee specifically to make sure that the interests of offspring are fully explored on any given issue. I think it is important that children’s interests are specifically attended to at that level.
Also, I would like new clause 35A, “Guidelines to be referred to committee of the House of Representatives”, to be inserted. This requires that guidelines from the ministerial advisory committee be referred back to Parliament for scrutiny.
During the debate on this part we have had some discussion on the “PGD”, or preimplantation genetic diagnosis, process. I want to bring up an interesting point. In New Zealand, in the middle of this debate on this legislation, it has been advertised that the Minister is calling for submissions from people who want to have their say on what sort of guidelines should be set for this process. Interested people have received letters, with some dates set as to when submissions close. The date is 12 November this year. However, it appears that the Minister has already made a decision on this matter and has announced it, I think, in the last day or so.
We have heard the arguments from Stephen Franks, who certainly would like to have no regulations and who states that there is almost no risk with these procedures. We have heard from a member at the other end of the spectrum, Sue Kedgley from the Greens, who would love to have far greater regulations and who also suggests there is an enormous degree of risk with most of these procedures. In the middle is Judy Turner, who wants the suspending of embryos to last for a microsecond within 14 days. They are all pretty impossible tasks, and they all demonstrate the need for flexibility within the mechanism we come up with to achieve a practical solution in dealing with this vast spectrum of human assisted reproductive technology. Once again I stress the fact that there is such a vast spectrum of it that it is impossible—
💬 Stephen Franks: Stay out of it, then.
Dr PAUL HUTCHISON:—to be able to generalise or make rigid rules either way. I hear Stephen Franks say we should stay out of it, but we just have to go to one specific area.
For instance, let us look at clause 13, “Commercial supply of human embryos or human gametes prohibited”. Undoubtedly in New Zealand there is a strong feeling that altruistic surrogacy and the altruistic supply of human embryos and gametes provide a hugely positive opportunity for those couples in need. But we know from the United States of America, where commercial surrogacy and commercial dealing in human tissues occurs, that some of the most awful distortions of human nature and results are imposed on the babies due to legal entanglements and fighting. We certainly would not want that sort of dealing to happen in New Zealand at this stage of events, or at least until we sort it out a little bit.
💬 Stephen Franks: Tell us about it!
I am sure that it would personally suit Mr Franks very well. It would keep him in business at high cost to the misery of potentially hundreds of thousands of people for a long, long time to come. There are much more important things to work out. Practically, it would be quite inappropriate, in my view, to have such dealing in a country where we do have altruistic donors who are willing, on an altruistic basis, to make it possible for people to take advantage of the technologies available. I think it was Sue Kedgley who said that there are no regulations, but here is a specific regulation that basically bans the commercial use of embryos, ovaries, and surrogacy, and, undoubtedly, that is right and proper.
When we look at clause 10, we see that human in vitro embryos and human in vitro gametes are not to be stored for more than 10 years. As my colleague Dr Lynda Scott pointed out, that is a hugely important provision. If, indeed, a young girl of 15 was diagnosed with cancer, then this may be her only opportunity to store her own gametes. She would be only 25 after 10 years—much below the average age of conception these days in New Zealand—but due to the flexibility of this bill, the ethics committee could allow her to have those gametes stored further. On the other hand, it is very important to have this under constant monitoring, because that same girl could have died. Who then owns the gametes, embryos, or whatever they are? Once again, we get into these enormous potential legal tangles. These are not simple matters, but it is important to work out some basic areas where we decide by consensus that there is sheer practicality for having these provisions, and I believe in clause 10 that is exactly what has happened.
Clause 11 talks about restrictions on sex selection of human embryos. Once again, this is an area where there is a possible defence.
The previous National Party speaker slightly mischaracterised my argument. I was not arguing that there should be no regulation; of course the normal constraints of the Hippocratic oath, “first do no harm”, and all the other kinds of obligations on medical practitioners should apply. The idea that someone should be allowed to deliberately or quite cold-bloodedly sacrifice the interests of one patient for money is antithetical to that in any event. In this area, all the normal medical ethics would prevail. There is no reason to consider that they are excluded. However, the member talked about enormous complexities and legal problems. We simply do not know that.
Parliament is imagining a host of menaces and Frankenstenian monsters, and deciding in advance what powers it will confer on a group of doctors. They will kick for touch because they are already battered by legal risks. They will make sure New Zealand is not at the forefront of any of this. New Zealanders who are rich will be fine. New Zealanders with the money will be able to go off shore, just as Irish women had to go off shore to get around the Catholic Church - inspired ban on contraceptives—in fact, as New Zealanders used to have to go off shore for abortions. Wealthy people will not be hurt by this. This will hurt ordinary hard-working people who cannot afford to go to countries that do not have a bunch of politicians who are quite so sanctimonious.
When I look at the provisions that were mentioned, for example, clause 13, “Commercial supply of human embryos or human gametes prohibited”, I see there is no reason why people would cease to be altruistic simply because others might advertise and be willing to pay for the inconvenience, embarrassment, and risk, particularly now that this bill goes on to require that there be disclosure. Now we cannot have anonymous donors, although we can still have entirely anonymous fathers—I think we have 15,000 of them every year through the welfare system, where there is no requirement to disclose who impregnated the beneficiary. We now have a requirement. People may want to be compensated for the risk that in 10 or 15 years’ time someone will front up to them, and say: “Hello dad, I want you to meet your moral obligations.”
What we have here is a very prissy and very anti-commercial attitude. It sounds very fine saying that there should not be commercial surrogacy, but it really means that the really public-spirited person, the person who has loved having her own kids, has found pregnancy not to be a burden, and would be quite happy to add that delight to another family, cannot be compensated. Curiously enough, the elite folk in the industry have made sure that they have exempted themselves. They are allowed to collect, store, transport, counsel surrogacy, inseminate for surrogacy purpose, do ovulation and pregnancy tests for surrogacy services, and give legal advice. They are free of any sanction. However, the woman who does all the work and who actually carries the child could be fined $100,000 by the prigs who pass this law.
I ask this Parliament to think a little bit past the self-righteousness that goes in saying: “We will only have volunteers in this industry.” That is all very well if there are enough volunteers. What about the thousands of New Zealanders out there at the moment who cannot find adopted children? Volunteering does not necessarily meet the demand. In an orgy of self-congratulation this Parliament is about to pass a bill that simply states that we cannot compensate someone for carrying a child for another family. I do not see anything worthy about that. I do not see anything high-moralled about that. I see that as a simple exercise—one group of privileged people saying: “We will judge others.” Similarly, with advertising. Then look at the committee provisions. This committee, however it is composed, will do something that our society rejected years ago. When electricity came in, when flying came in, or when motorcars came in, if a committee of experts had been available to decide whether those were utterly safe, they would never have gone anywhere. They would not have happened.
When we look at the fine print of this bill someone like Mr Franks should be very reassured, because in the absence of any regulation, basically it is all left to some very vague guidelines that would enable almost anything to take place and that would be very, very hard to police. Dr Hutchison corrected me—there are some regulations that prohibit some things, and we are very thrilled about those. Despite what Mr Franks said, they do prohibit genetic engineering, cloning, and a few other things, and we are very, very pleased about those. But although this bill has a whole set of regulations about what is prohibited, it basically has no regulations about what is permitted, and that is our problem. That is why we have a very simple amendment to insert new clause 35A, which basically states that guidelines issued by the advisory committee may be used as a basis of an ethics committee approval once they have been issued as regulations.
I want to point out to the Committee just how weak those guidelines are. I have a number of those guidelines and one could literally drive the veritable bus through any of them. In fact, I do not see how any of them could be enforced. As an example, the guidelines on pre-implantation genetic diagnosis just released 2 days ago say basically that it is the responsibility of the providers—the fertility clinics—to decide whether a disorder is likely to be serious in an offspring of a particular couple. So it is up to the fertility clinics to decide. Where does one draw the line? What is a serious disorder? Is it a cleft palate? What is it? That is just an example. The guidelines state that pre-implantation genetic diagnosis for anything will be considered on a case-by-case basis. Dr Linda Scott is looking perplexed. She should look at the guidelines.
Another guideline I have here is for the disposal, storage, and use of sperm of a deceased man, and it states: “A clinic should undertake an annual review … It is expected that sperm collected in the circumstances would be stored for a maximum period specified by the clinics.” How will that be enforced? It is expected that they will be collected for a maximum period—it is expected. It is also stated that partners of the deceased should be encouraged to inform the wider family or whānau. How will that be reinforced? These are wiffly-waffly words—“it is expected; we should have done this, or we should have done that.” How will the Government try to use that as a basis for policy making, regulation, or enforcement? It will not be able to.
Here is another example, and this will exercise Stephen Franks. It is “Guidelines for non-commercial altruistic surrogacy using IVF as a treatment”, and it states that the prospective birth mother and her partner should have completed their family, as this may reduce the likelihood they will want to keep the child. It also states that they should take measures to ensure that they do not conceive their own child during the treatment. Frankly, it is just laughable. Fortunately, the Minister is listening to this. Those are the guidelines that will regulate some of the most far-reaching things in New Zealand about how far we may go in assisted human reproduction, and where we will set the limits. Basically, Mr Franks can rest assured.
If one was cynical, one would say that this bill is almost in the category of a regulatory facade. It sort of implies that there are clear limits, but when we dig down and look at the fine print, we see instead that we have some wiffly-waffly guidelines that, basically, will be unenforceable. That is why all we are asking is that the guidelines, as in every other Western country that has legislation, should have regulatory force. All we are asking is that they have the force of regulation that would have to be considered by the Regulations Review Committee. Also, we have amendments to the effect that the guidelines should come before Parliament and be sent to the Health Committee for consideration.
I take over from where my colleague Sue Kedgley left off on this issue, because I share her concerns. These guidelines are nothing short of a complete abdication of responsibility by the ministerial advisory committee. They are saying: “Our advice is that we give the responsibility to clinics.” That is so far from what any of us in the select committee thought the guidelines would be like. We thought they would have a little more substance to them than that. Straight away, for me, alarm bells are ringing. That brings me to, I guess, what is my greatest concern.
If I had to pick one issue out of this bill and say that for me it is the No. 1 scary issue, it is clause 37, which is directly linked to the issue Ms Kedgley has just been talking about and is directly linked to these proposed guidelines. Clause 37 states that the advisory committee is to provide specific advice in respect of human assisted reproductive technology, and it lists a number of things that the ministerial advisory committee has to develop guidelines on as a No. 1 priority. Some of these things were strongly recommended by submitters to be included on the prohibited activities list, but they were not included on that list. They have been put in here, and the ministerial advisory committee has, by its intention, already shown that it will abdicate its responsibility and pass it over to fertility clinics and fertility counsellors. Those clinics and counsellors will decide what should be done on issues such as donations of embryos, embryo splitting, which has a huge number of implications and even legal ramifications, gametes derived from deceased persons—this is our own “Mrs Blood” potential; we are now asking for guidelines on those to be developed, with no reference back to this House—and requirements for informed consent.
Even the requirements for informed consent are interesting. When we look at what ethics committees decide, we see that most of what the guidelines seem to be concerned about is whether everybody has signed the right piece of paper and whether everybody has consented, rather than some of the considerations that a lot of us have. What are we doing to society? What will be the long-term outcomes for offspring and their families as a result of allowing those procedures? We need to look at the bigger picture, not just at whether everybody who is involved today has signed the appropriate consent form.
We are requiring the committee to provide guidelines on pre-implantation genetic analysis. We are asking it to provide guidelines on the importing, or exporting from New Zealand, of in vitro donated cells or in vitro donated embryos. These are hugely significant issues. Mr Franks is making light of the fact that we will have court cases out of this. I tell Mr Franks that there are already active court cases right now in New Zealand involving biological parents warring with each other over who is the legal guardian. For instance, we have cases where—
💬 Stephen Franks: This doesn’t resolve it.
That’s my point.
💬 Stephen Franks: Why support it?
I am not supporting it.
💬 Stephen Franks: Why are you voting for it?
I am not voting for it. This is the point I make. However, my solution is totally different from that of Mr Franks. His solution is: “Let’s all just take our hands off and let the market get it right.” I am saying that this legislation is too loose. We need to tighten it down. We need to turn these guidelines into regulations so that we are very, very clear, issue by issue, as to what is acceptable practice and what is unacceptable practice. There has been a general scrutiny of these issues by people with a vested interest. As members of the House of Representatives, we are in what I consider to be the unenviable position of representing large numbers of voters in this matter, and to be excluded from any part of this process would be a very, very sad thing.
I encourage members of the Committee who have a copy of the bill in front of them to take a very close look at clause 37, which, I think, is the most dangerous clause. If I was concerned before I entered the Chamber tonight, I am now even more concerned when I see the test case of what is already recommended in the guidelines, which, as I said before, show a complete abdication of responsibility.
I did not finish talking about the Green’s final amendment to clause 72. I would like to take a final call on this one.
💬 Richard Worth: You’re jumping ahead.
I am sorry, the member is absolutely right. I will go back to new clause 35A. I thank the member for pointing out that I have jumped ahead of myself.
Basically, I want to make it absolutely clear that the Green Party is supporting this bill, but only because we believe it is slightly better than the status quo. We are not supporting this bill because we think it is marvellous and we are enthusiastic about it. What we did think was an excellent bill was Dianne Yates’ original bill, before it was gutted. The original bill set up a proper licensing regime and a system based on what is used in the United Kingdom—a system similar to that in Canada and other places.
The bill has been completely gutted. It must be distressing to Dianne Yates, but I am sure she takes the view of the Green Party that it is better to have something in this area than nothing. At least we have outlawed some of the worst excesses—namely, genetic engineering and cloning—and at least we will have a committee that will consider the issues and call for submissions.
I am interested that some of our members were as horrified as I was to read the guidelines that have been put out. All we will have in the future are those waffly guidelines. I agree with Judy Turner. Frankly, it is shocking that the guidelines would leave it up to providers to decide on such fundamental issues as what is a serious genetic disorder and what is not. It is completely left up to the fertility clinics.
💬 Dr Lynda Scott: An excellent idea.
Well, that is not what Bill English was saying. Of course, I know that some members on that side of the Chamber have a background in fertility clinics, and from their perspective I am sure that fertility clinics would like the absolute minimum of regulation. Well, they have it in this bill. They have virtually the green light to do whatever they like. We have a bit of a regulatory facade in many respects, which makes it sound as though we have some sort of control over these areas, but, frankly, when we look at the fine print, we see that the guidelines are virtually unenforceable. What will happen if some fertility clinic goes beyond these wiffly-waffly guidelines? How will someone try to enforce them? I have read out some of these things, such as “they should do this”, and “they should take measures for that”, but frankly, the guidelines are completely unenforceable.
I appeal to members to do the simple thing of putting them into regulation. The Associate Minister of Justice, David Benson-Pope, is here. I know he has taken this bill on at the last minute, and I know he is very, very busy, but I appeal to him to show a little common sense. What is the problem with following the example that has just gone through the Canadian Parliament and giving the guidelines the force of regulation? Why is the Labour Party so utterly opposed to putting regulations on these extraordinarily contentious areas? We have regulations for almost every conceivable thing. The Regulations Review Committee deals with regulations morning, noon, and night. The chairman of that committee, Richard Worth, is sitting here. Why on earth would we not have a regulation surrounding such issues as the taking of gametes from deceased persons, embryo splitting, and other such contentious issues? Why would we allow that to go to an unelected, unaccountable committee, which, as Bill English pointed out, is basically a law unto itself and not accountable to anybody? Why will we not even allow those issues to be debated and discussed in this Parliament?
I will let members know, when we come to my amendment to Dr Hutchison’s Supplementary Order Paper, that our amendment states specifically that if the issues are inconsequential and small, then of course the Minister can say they do not need to come to Parliament. We are saying that only on contentious issues—those about which New Zealanders are likely to feel very strongly—should we in this House have the ability to discuss and debate them. Let us make no mistake about it, this committee is basically setting policy.
I have made no secret of the fact that in some areas of this bill I would prefer a regulatory system, rather than guidelines. As members know, guidelines cannot be enforced, but regulations can, and they have a checks and balances process through the Regulations Review Committee.
Some areas in the bill that are internationally highly controversial are open to the guideline process—such as, as we have seen, taking gametes from a deceased person. The consent process, in terms of both the technology and the patient, is also left up to guidelines. In most other countries that have this legislation the consent process is also subject to regulation and is quite clearly spelt out. That is particularly the case, as has been said already, in Canada.
The other thing I wish to speak about is Judy Turner’s amendment to clause 33. I think it is a very good amendment. Clause 33 refers to the ministerial advisory committee and who should be on it. The select committee agreed there would be one member with expertise in reproductive technology, one member with expertise in human reproductive research, one or more members with expertise in ethics, one or more Māori members with expertise in Māori custom and values, one or more members with the ability to articulate issues from a consumer perspective, and one or more members with expertise in relevant areas of law.
This amendment also states that there should be one member with the ability to articulate the interests of children, and refers to the appointee being someone from the Office of the Commissioner for Children. Taking note of the opinions of in vitro fertilisation children who submitted on the bill and of what Dr Hutchison said, I think it is an extremely good idea and a very good amendment. The paramountcy of the rights of the child have not been included in the bill, and I think it would be a very, very good idea for someone on the ministerial advisory committee to be given the responsibility to represent the rights of children and to be able to look at the future interests of those who are born from this process. It is part of the principles of the bill, and by including the clause 33 amendment in the name of Judy Turner we will have the interests of children at heart. That will also include and take into account some of the concerns Mr English has about this bill. I think it is a very good amendment, and we will be supporting it.
Again I appreciate the opportunity to participate in the debate on the Human Assisted Reproductive Technology Bill. This is the bill that will regulate assisted conception and forbid cloning and hybrid embryo transfers, etc. It is not common in Parliament that we debate issues in genuine debates. I have appreciated the opportunity to hear Ms Judy Turner’s contributions and to see the amendments she has put forward. She tells us that United Future will oppose this bill, and I am glad about that. But she has attempted, nevertheless, to mitigate its consequences. I am, however, really puzzled about the position of the Green Party. The member sitting beside me, Sue Kedgley, who spoke for the Green Party on this bill, has talked constantly about it being effectively not regulation at all. She has called it “wiffly waffly” and not achieving any objectives. She has used a whole lot of terms to say that the bill does not do anything.
What I am baffled about is that Sue Kedgley was the deputy chairperson of the Health Committee, and the committee’s report states: “The Green Party is pleased at the way many aspects of this bill have been strengthened by the select committee. We are particularly pleased with the new provisions that prohibit the genetic engineering of humans and that prohibit the sex selection of embryos for any reason other than treating and preventing genetic disease. We also welcome the strengthened requirements for public consultation …”. That does not sound very “wiffly waffly”. The report goes on to state: “The bill gives the Ministerial Advisory Committee wide-ranging and virtually unlimited powers to issue guidelines and advice on any matter relating to any kind of assisted reproductive procedure …”. Now, it is true that at this stage guidelines could be seen as “wiffly waffly”, but Ms Kedgley goes on to state in the report: “These ‘guidelines’ will not only set out policy on a wide range of assisted reproductive procedures; they will also be in reality binding legal instruments, or a form of delegated legislation …”.
How is it that we can hear so many strident speeches in the Chamber about “wiffly waffly” non-prohibitions that at the same time are binding legal instruments, or a form of delegated legislation? They have to be one thing or the other. I would really appreciate it if the member in the chair, Dianne Yates, who is in charge of the bill, could seek advice from the officials and give us at least their view on whether this stuff is as “wiffly waffly”, inconsequential, and irrelevant as the Green member has been portraying it, or whether it is, as I fear, a straightjacket on medical research and on medical technology in this country. This is yet another incentive for our best young graduates to disappear overseas to far more interesting and vibrant scientific environments. Worse still, it is a reason, because it is binding, for ordinary New Zealanders who desperately want children to go elsewhere and spend their hard-earned money from New Zealand on doctors and other technologies in countries where people have not panicked at the first sign of a change in the status quo. That is what this issue is about.
This bill is equivalent to a bunch of politicians deciding, when the Wright brothers first took off from an airfield, that they had better appoint a bunch of experts to decide whether anyone should be allowed to fly, in case they hurt themselves. There is no difference in substance. There is no evidence of any significant risk that has materialised to anyone in this area. There are legal uncertainties, just as the Wright brothers faced legal uncertainties. I have confidence that the cases that Judy Turner has mentioned will be worked out by the courts, and that we will learn from those in a way that a bunch of sanctimonious parliamentarians can never learn by consulting their fear of the dark. What we have here, as has been admitted, is ignorance and a lack of knowledge of what could, or may, happen. We have a decision that instead of the New Zealand tradition that what is not specifically prohibited is lawful, which is the proud boast of English law, what is not specifically permitted is prohibited. That is a very bad legal principle. It follows the Continental principle. That is what despots do—they do not do anything unless they have been told that they can do it. That is what this law does. That is why most of the ACT party will vote against this bill. We think it is a very proud principle of freedom that one can do anything that is not specifically prohibited.
There were two points that I just wanted to answer. One was the repeated assertion by Stephen Franks that there is a risk-free aspect to the technologies addressed in this bill.
💬 Stephen Franks: No risks.
Well, he seems to be wavering on that. Undoubtedly there is a spectrum of risk. Although at one end it is indeed serious, at the other end it is minimal; hence the beauty of the way that this bill is constructed, in that it allows flexibility.
The other point that I want to make, once again, is the value of the guidelines. Sue Kedgley from the Greens asked us what constitutes a serious congenital or genetic condition, and that of course is extremely difficult to define. Last night on National Radio we heard a discussion on the proposed guidelines for pre-genetic implantation diagnosis in New Zealand by a variety of experts in the area, including people from the disability sector. They made a very strong plea that there may be one particular condition, such as Down’s syndrome, where for the parents and in the circumstances in which such a child is born, it is hugely beneficial for those around it. However, they also made the point that there may be a condition like Lesch-Nyhan syndrome, where automatically the baby will be born without any ability to have a functioning brain, will tend to be self-destructive, and will inevitably die. A parent who has had a child like that on two or three occasions would undoubtedly find it hugely traumatic to have a further similarly affected child. Pre-genetic diagnosis is a new technology that may avoid such a disastrous consequence. The point I want to make to Sue Kedgley is that the judgment of what constitutes a serious condition is extremely difficult and is variable, so it is impossible to regulate a whole list of things that we will ban, or that we will stop. Hence, that is the absolutely appropriate reason for offering guidelines that the experts can then get on with applying practically.
The question was put that the amendment set out on Supplementary Order Paper 267 in the name of the Hon David Benson-Pope to clause 8(2) be agreed to.
The next amendment is to clause 33 in the name of Judy Turner. It is a typescript amendment to add a new paragraph (g) and subclause (4)(a). It replaces the amendment to clause 33 set out on Supplementary Order Paper 268.
The question was put that the following amendments in the name of Judy Turner to clause 33 be agreed to:
to add to subclause (4)(f) the expression “; and”;
to insert the following new subclause:
(4)(g) 1 or more members with the ability to articulate the interests of children.; and
to insert, after subclause (4), the following new subclause:
(4A) Any person appointed by virtue of subsection (4)(g) must at the time of his or her appointment hold the office of Children’s Commissioner or be a representative or employee of the person who holds that office.
🗣️ Spoke in this debate (10)
- Mark Burton (New Zealand Labour Party — Member for Taupō)
- Stephen Franks (ACT New Zealand — List Member)
- Bill Gudgeon (New Zealand First Party — List Member)
- Paul Hutchison (New Zealand National Party — Member for Port Waikato)
- Sue Kedgley (Green Party of Aotearoa / New Zealand — List Member)
- Simon Power (New Zealand National Party — Member for Rangitīkei)
- H V Ross Robertson (New Zealand Labour Party — Member for Manukau East)
- Lynda Scott (New Zealand National Party — Member for Kaikōura)
- Judy Turner (United Future New Zealand — List Member)
- Dianne Yates (New Zealand Labour Party — Member for Hamilton East)