I beg to move,
That this House takes note of the Human Fertilisation and Embryology Authority’s most recent scientific review into the safety and efficacy of mitochondrial replacement techniques which highlights concerns for subsequent generations of children born through maternal spindle transfer and pronuclear transfer; welcomes the recent comments of scientists including Professor Lord Winston that, prior to the introduction of such techniques, more research ought to be undertaken and a full assessment conducted of the potential risk to children born as a result; and calls upon the Government, in light of these public safety concerns, to delay bringing forward regulations on mitochondrial replacement.
I am pleased to move this motion and to have gained support from so many Members from across the House, and I thank the Backbench Business Committee for allowing us the time to debate it.
It is in our interest as a nation to be at the cutting edge of technological progress. However, in striving for such progress, we cannot afford to cut corners when it comes to public safety. Surely this can nowhere be more true than in relation to the proposal that pronuclear transfer or PNT and maternal spindle transfer or MST be permitted in an attempt to create children who do not inherit mitochondrial disease. In 2011, 2013 and 2014, the Human Fertilisation and Embryology Authority or HFEA assessed the safety of the procedures, and on every occasion it reported that further research was required before the public could be satisfactorily reassured regarding them. It described experiments as “critical”, with some not even having started in June 2014. It stated that
“there are still experiments that need to be completed before clinical treatment should be offered. The panel considers that some of these experiments are critical and others desirable.”
Even more concerning, it stated, was that
“the process cannot be expected to guarantee safety or efficacy when applied for the first time in a clinic.”
In other words, to allow these procedures at present would be tantamount to experimentation.
Does the hon. Lady accept that when anything is tried on a human for the first time, we cannot be absolutely certain what will happen? Is she really saying that we should not do anything—no cancer treatment, nothing—until we are absolutely 100% certain that there are no side effects? Does she not accept that we are trying to treat hideous diseases?
I accept that in no case can one be 100% sure that a technique will be safe. However, we are very far from that in this case. This is a case of genetic engineering; it is the alteration of a potential human being—the removal of certain genes and their replacement with others, to create children. Surely, in such cases, we should be very careful over safety before we proceed.
I am grateful to my hon. Friend for securing this debate. It is not just her who has concerns about safety. When legislation was scrutinised in 2008, the right hon. Member for Bristol South (Dame Dawn Primarolo), now Madam Deputy Speaker, said as the responsible Minister that the safety of such techniques needed to be established before we could proceed.
Order. Nineteen Members wish to speak and other Members are trying to catch my eye to intervene. It is an important debate and we need to allow the allotted speakers in, so Members should think very hard before trying to intervene.
Thank you, Mr Deputy Speaker.
Parliament should be allowed to deliberate on and debate this issue at length, but that might not happen. I understand that the Government propose to lay regulations permitting PNT and MST before the end of this year. Sir John Tooke, president of the Academy of Medical Sciences has said:
“Introducing regulations now will ensure that there is no avoidable delay in these treatments reaching affected families once there is sufficient evidence of safety and efficacy.”
In other words, Parliament should vote blind and sign off legislation permitting these procedures before the recommended experiments—some of them critical, regarding safety—have been completed.
As a veteran of these debates, going right back to 1985, I wish to commend my hon. Friend enormously for what she is saying and doing. There has been a history of manipulation, involving packing of committees, for example, over an extremely long period. My hon. Friend is right to take the line she is taking: it is not just about health and safety, but about the whole question of the ethical and moral values that lie behind attempts to manipulate genes. We all want to help people; the question is whether this is the right way to do it. I emphatically believe that it is not.
I thank my hon. Friend for that intervention.
Even more worrying than the quotes I have cited from the HFEA is the fact that many scientists, national and international, have gone further in publicly stating that these procedures should not be authorised at all—and not necessarily because they are against them in principle, as some are not against them. Stuart A. Newman, professor of cell biology and anatomy at New York medical college has described these proposals as “inherently unsafe”. Paul Knoepfler, an associate professor in the department of cell biology at the UC Davis school of medicine recently wrote that a process of this kind
“could trigger all kinds of devastating problems that…might not manifest until you try to make a human being out of it. Then it’s too late.”
I am grateful to my hon. Friend and respect what she is saying. Safety is paramount, but for every year we delay bringing this science and technology forward, 6,500 children will pick up these horrible inherited diseases, and many of them will die. At what stage would my hon. Friend say that the risks of mitochondrial donation become proportionate to the severity of mitochondrial disease to which many of our constituents are subjected?
I can respond in this way. In the general science, concerns have been referred to. A mismatch between nuclear and the mitochondrial DNA could cause severe health problems in children conceived with this technique: problems such as infertility, reduced growth, impaired learning, faster ageing and early death. Are those not sufficiently serious for us to be extremely concerned?
I support the work to combat this terrible disease, some of which is being pioneered by my local university, Newcastle, and I will be urging the Government to proceed with the trials, but the question is this. The new IVF technique that has been pioneered at Newcastle has proved to be successful in the laboratory, but the current law prevents it from being tested in a clinical trial or used in clinical practice. That is what we need to change. Without those clinical trials, we cannot progress and deal with this terrible disease.
That is very interesting but the point I am making is that at the moment such clinical trials would involve children. Two peer-reviewed articles in Nature have suggested that mitochondrial transfer is inherently risky, one of them citing a figure of 52% of embryos created through MST having chromosomal abnormalities.
There has been reference to the curing of disease but is that not a misleading way of putting it? What is happening is the creation of different people from those who would have been born suffering from the disease. Therefore, this is not curing an existing condition. It is stopping someone being born who would otherwise have been born.
That is absolutely right. This technique will not provide a cure of mitochondrial disorders at all. Indeed, concern has been expressed that even where a female child born through the process appears not to suffer from the disease she could still be a carrier.
I am beginning to think there may be a point at which I must not take any more interventions, simply because I know how many other Members wish to speak. I will not give way from now on. I would be delighted to, but I am aware that almost 20 Members have asked to speak in the debate.
Professor Lord Winston, who supports the regulations in principle, has recently expressed concerns over public safety:
“I don’t believe there has been enough work done to make sure mitochondrial replacement is truly safe. There probably needs to be a great deal more research in as many animal models as possible before it’s done.”
I will not give way again, as I said. Mr Deputy Speaker has asked me to limit my time quite severely in order that many other Members may contribute to this important debate.
It is vital that, taking advice from scientists, the decision about whether to proceed down this road is made by this House and is seen to be made by the public. It would be wrong for Parliament pre-emptively to sign off the legislation even if there were a provision in the regulations saying that the Government would not move to implementation until such time as the HFEA said it was content with the outcome of the pre-clinical report. That would be to outsource the final decision to technocrats, possibly behind closed doors, rather than in the transparent environment of this Chamber, in full public view. Parliament cannot be seen to provide pre-emptive mandates in relation to a subject on which there are such significant public safety concerns. We need scientists and experts to conduct the research but we must make the final decision.
I realise that you would like me to conclude, Mr Deputy Speaker. I will now do so with regret, because I would have liked to say a great deal more, particularly regarding the public concerns relating to the proposals. According to a ComRes poll, a limited number—only 18%—of the public are in favour of the proposals.
I congratulate the hon. Member for Congleton (Fiona Bruce) on securing the debate.
Members may not have heard of ovarian hyper-stimulation syndrome, or OHSS, as it receives little coverage in the media, but it is one of the most serious complications associated with the use of certain fertility drugs during the procedure known as controlled ovarian hyper-stimulation, which is a part of fertility treatment used to ensure that the number of eggs collected is as high as possible. OHSS is not uncommon—research suggests that as many as a third of women who undergo controlled hyper-stimulation experience some symptoms, although serious cases are relatively rare. Younger women, women with certain pre-existing health problems such as polycystic ovaries, and women who have had OHSS before, are particularly at risk. Severe cases of OHSS can be very dangerous and even life-threatening, with painful and debilitating symptoms. However, monitoring of cases of OHSS is far from adequate. In answer to a parliamentary question, the Under-Secretary of State for Health, the hon. Member for Battersea (Jane Ellison), stated that
“The HFEA does not…hold definitive data on the number of women admitted to hospital with OHSS, including non-patient egg donors and egg-share donors.”—[Official Report, 9 July 2014; Vol. 584, c. 313W.]
Does my hon. Friend agree that it is probably necessary for the Government to bring proposals to the House for us to consider? There is not a lot of understanding about the disease outside the House and the public could be better informed, whichever way the decision goes.
I agree. There is probably not enough understanding within the House, either.
The Minister had previously said:
“licensed fertility clinics are only required to report instances of OHSS to the authority that require a hospital admission with a severe grading, although in practice clinics often report moderate OHSS as well.”—[Official Report, 24 June 2014; Vol. 583, c. 157W.]
The figures that do exist indicate there has been a small recent increase both in the total number of recorded cases and in those cases categorised as “severe” rather than “moderate”. About 50,000 women go through IVF in the UK each year. The fact that we do not collect proper data on a potentially life-threatening condition that may affect a third of them, seems an astonishing oversight in the collection of official health statistics. Mandatory reporting of all cases is an essential first step in this process, but should only be the start of more effective and careful collection of statistics.
This issue has a particular pertinence at present because of proposed changes to the law on mitochondrial transfer and the Government’s stated intention to allow the creation of three-parent embryos. I am sure that many Members may be struggling to get to grips with the details of this procedure, but simply put both of the techniques used in mitochondrial transfer require a significant supply of donor eggs. Any such eggs will have to come from women who have been through controlled ovarian hyper-stimulation, with all the attendant risks.
I will not. Sorry. There is not time.
It appears that very little consideration has been given to this fact in any of the various consultations and Government position papers that have emerged over the past two or three years. No in-depth questions about the physical health of women donating eggs were addressed in the HFEA’s own briefings. Will the Minister assure the House that she will take the matter back to her Department for consideration? In the light of the safety concerns we have heard today associated with the proposed techniques, such action would appear to be urgent, for the sake of the vulnerable women involved.
I appreciate this opportunity to speak from the Back Benches, perhaps for the first time in 20 years, so I apologise if I am a bit rusty. This is an important debate and I would like to comment briefly on the issue, drawing on my experience as Minister with responsibility for science.
To put my cards on the table, I think that this is a great piece of British scientific advance. We should congratulate the scientists at Newcastle university who have been in the lead in the research. My view is that provided it meets stringent safety requirements this is something that should go ahead because it will alleviate the suffering of constituents whom we represent.
I thank the right hon. Gentleman for kindly giving way and for his expertise in this area. It is of particular interest to my constituents Val Thomas of Cefn Cribwr and her sister Mrs Pitt, whose family have conditions that stem from mitochondrial deficiency. Does he agree that it is important to get accuracy in the record when we quote scientists, not least the correction that has been made by Lord Winston? He said this week to The Times:
“This is a marvellous thing for people with diseases that are incredibly rare and that have terrible consequences.
I am perfectly supportive of the regulations and I would vote for them.”
I confirm that my understanding is also that Lord Winston supports the advances in this area.
The evidence is pretty clear that this could alleviate human suffering, but I am not a simple-minded believer that the consequences justify whatever we do. Looking at my hon. Friends assembled in the Chamber today, many may say, “All right, this alleviates mitochondrial disease, but the price—the threat to human dignity or integrity—is too great.” I should like briefly to touch on those types of objection.
First, I do not agree with my hon. Friend the Member for North East Somerset (Jacob Rees-Mogg) that this somehow creates different people. We are not talking about the nuclear DNA that makes us who we are—the characteristics of our character or appearance. This is about a very distinctive part of DNA that has been called, for us laymen, a battery part of the cell, not the nuclear DNA, so it does not affect identity.
It is a difference between quality and quantity. It is a change of 0% of the nuclear DNA that gives us our characteristics. It is a change in the membrane of the cell so that the battery function continues, but it does not affect human identity even by 0.1%. That is why I do not believe that there is an issue of dignity or integrity of the individual.
There is an argument that this is an engagement with people’s ability to produce children that is reminiscent of some of the worst features of eugenics. In fact, in many respects it is the opposite of eugenics. Eugenics was about forced sterilisation. It was about saying to people who were thought to carry some disease, “We’re not going to allow you to have children.” This is the opposite. It is about saying to people, “We want you to be able to have children and to be able to do so free from the anxiety that they will be bearing some disease.” It is exactly the opposite of the parallel with eugenics that is sometimes claimed.
That leads me on to the next objection. We are sometimes told, “Life is a vale of tears. There are sorrows and burdens that people have to bear, they should bear them with dignity, and this disease is part of that.” I have two responses to that argument. First, we have not run out of human frailties and problems yet. The problem facing our society is not yet that we have all started to lead lives of bland satisfaction.
It is also important to recognise that these scientific advances create a new problem. For the first time, a parent—a mother—could know that she could transmit this disease to her child. We have learned something that we did not know before. If we allow people to have this knowledge but do not permit a medical intervention that will tackle the problem, we have created a new source of human suffering that did not exist before this scientific understanding came about. Now that this knowledge is available, failing to permit families to act on it would be an unacceptable addition of a new cruelty to what is already a very distressing condition. Therefore, in terms of our respect for human integrity and dignity, it is right to intervene.
Then there is the argument that we are on a slippery slope. However, the framework set out in the Human Fertilisation and Embryology Act 2008 is very clear that we are not allowed to intervene in the nuclear DNA that shapes a child’s identity. That is recognised specifically as an exemption in the 2008 legislation.
This is a scientific advance that does not affect human identity, that is the opposite of eugenics, that enables people to escape a potential new cruelty if we do not act on this knowledge, and that is not a slippery slope. This is not just my view. We conducted a structured dialogue to consult members of the public on what they thought. When they understand that this is not to do with hereditary characteristics being affected by an arrogant intervention to create a designer baby, they support these interventions. If they support them, then so should we, in all parts of the House.
As a former NHS scientist, I would like to speak in support of the motion proposed by the hon. Member for Congleton (Fiona Bruce). Whatever our personal views on the ethics of mitochondrial transfer, it is remarkable from a procedural point of view that the Government are considering putting these regulations before the House before the critical pre-clinical tests by their own body, the Human Fertilisation and Embryology Authority, have been performed, written up and peer reviewed. I am not against research. I support scientific research, but scientific research that is safe. That is the situation in America, where this was put on the back burner basically because of the issue of safety.
In my humble opinion, it is scientific practice to presume that tests will yield positive results. That has had the whiff of manipulating the evidence to fit the hypothesis. In this case, however, it is even worse, as the necessary evidence has yet to be produced. Such a methodology would not stand up in the scientific community, and if it is not good enough for the scientific community, it is not good enough for this House. We must wait for these results and examine them in detail. After all, we are talking about the possibility of permitting techniques which could be—I repeat, could be—disabling to the children who are created through them. As Members of Parliament elected by the people, we should be made fully aware of the risks and safety concerns surrounding these new techniques before voting on whether they should be allowed.
There are three camps in this debate. There are those who oppose mitochondrial transfer for ethical reasons and those who are strongly in favour, but there is another group: those who are in favour but are concerned about safety. The votes of this third group will be determined by the available evidence. That evidence has not yet been produced. I am not talking about the more stringent evidence asked for by the world-renowned US Food and Drug Administration in its recent report on the subject, but the few tests that the Human Fertilisation and Embryology Authority—a clear and obvious supporter of the techniques—recommended as the critical bare minimum to be completed before progressing. We do not have the results of those tests. Does the Minister agree that it would be a subversion of due process to ask Parliament to vote pre-emptively on them?
Does the hon. Gentleman appreciate, though, that the HFEA’s expert panel is commending these techniques, and that if the regulations are passed, the responsibility for safely licensing each application will still rest with the HFEA, so the safety process will still be in place? This is a permissive step.
I understand the hon. Gentleman’s point, but may I refer him to Dr David King, director of Human Genetics Alert? He is sympathetic to this process but fears that science is racing ahead of ethics. He says that we are in danger of creating designer eugenic babies, and we do not know where we are going in future.
Denying Parliament the opportunity to examine these results seems difficult to defend. In effect, it would be asking the House to vote blind on the safety of techniques that the House might reject outright on the basis of the results. Let us be clear and honest about this: the results could not be published and peer reviewed in time for the rumoured vote in the autumn. I end with a clear and simple question to the Minister: do the Government intend to ask Parliament to vote on these regulations before the HFEA’s suggested critical tests are performed, written up and peer reviewed; and if so, why?
I congratulate my hon. Friend the Member for Congleton (Fiona Bruce) on introducing this debate. It is absolutely essential that Parliament has the opportunity to talk through these important details at greater length.
As my hon. Friend knows, I am usually very conservative on ethical matters such as this. I do not usually advocate anything that might be seen as playing God. I have severe reservations about euthanasia. I have always opposed and will always oppose anything that would modify human characteristics and be seen as creating some form of designer baby. However, there are times when one has to be pragmatic. I have met families of the victims of these terrible, deforming, disfiguring and life-shortening diseases. It is right that we should use our human knowledge for the good of fellow mankind. It is great that, as my right hon. Friend the Member for Havant (Mr Willetts) has said, British science is leading the way.
Science is about finding cures and solutions, and this is just a different way of preventing horrible things from happening to our children. It is fundamentally a human intervention and it should be judged purely on the basis of whether we are doing more good than bad. I believe that we are when one in 6,500 of our constituents each year contract, without any choice, these horrible inherited diseases. The longer we say, “We need more checks, more safety, more testing”, the longer we are delaying a cure.
We need to get on with it. It has been widely consulted on. I have received virtually no letters on this matter and we need to take a balanced judgment on when the risks of mitochondrial donation become proportionate to the severity of the diseases that are affecting our constituents now. As colleagues have said, it will be licensed by the HFEA based on the safety and efficacy of the evidence, and those licences can be withdrawn at any time.
“Mitochondrial donation only allows for unaltered nuclear DNA to be transferred to an egg or embryo that has unaltered healthy mitochondria. These techniques only replace, rather than alter, a small number of unhealthy genes in the ‘battery pack’ of the cells with healthy ones. Mitochondrial donation does not alter personal characteristics and traits of the person.”
That is an important consideration, because:
“Mitochondrial donation will enable mothers to choose to have children who are genetically related to them, with a natural combination of nuclear genes from both parents while being free from a potentially devastating disease.
Nuclear DNA is not altered and so mitochondrial donation will not affect the child’s appearance, personality or any other features that make a person unique—it will simply allow the mitochondria to function normally and the child to be free of mitochondrial DNA disease. The healthy mitochondria will also be passed on to any children of women born using the technique”—
so we are doing good for generations to come as well.
I agree with what my hon. Friend is saying, and I do not agree with the motion of my hon. Friend the Member for Congleton (Fiona Bruce), although I have great respect for her, as a fellow Christian in this House. The work at Newcastle university is being funded by the Muscular Dystrophy Campaign and by the families and the people whom it supports and works with. Does my hon. Friend the Member for East Worthing and Shoreham (Tim Loughton) agree that the fact that they are putting money behind this, speaks volumes about the motives behind the work and about not letting the bad be the enemy of the good?
My hon. Friend is absolutely right. I think it is a great triumph that a British university is doing this important work. To those who say, “No other country allows this sort of thing,” I say, “Well, great; we are pioneering here, as British science has done in so many different areas.”
We need to be honest. We can raise a question about the ethics of it, but we should not hide behind safety considerations when certain people really oppose it for ethical reasons. Let us have that honest debate. I am prepared to give my support to these regulations and to us getting on with this science, with the assurances that there will be strict licensing conditions based on strong scientific evidence and that this in no way can lead to anything that can be remotely construed as designer babies, which I find completely and utterly abhorrent.
We should get on with it. Mankind has used its knowledge and skill to invent some pretty devastating and ghastly ways of disfiguring, maiming, neutering and killing human kind. We should celebrate this remarkable advance in using our scientific knowledge—our human skills—for good, and potentially for the good of generations to come in the families afflicted with these terrible illnesses.
Mitochondrial disease is horrible. It has dreadful effects on children and shortens their lives and there is no cure. The scientists at Newcastle university have been trying to improve the inadequate treatment services that are presently available and one of the reasons why they got involved in this research is that they do not see very much progress there. The replacement technique does not provide a cure; it prevents the condition from arising in the first place, and generally speaking we all believe prevention is better than cure.
There is no other option for these families and children. What is proposed would not be permitted under the law passed in 1990 and there has been consultation since 2003 about changes to the law, which led to the law being revised in 2008. That permitted progress to be made on this issue by regulation when the House decides that that should happen.
Some people have fixed views and are totally against any embryo research and any changes to human fertility, and some other people want a total free-for-all. By and large, most of us do not want either of those things. The practical measures that were put in place through the HFEA have worked very well. They provide protection against the unprincipled and dangerous use of genetic science, and everything is subject to strict regulation. People are rightly concerned about the idea of designer babies and super-babies and the creation of a master race, but mitochondrial DNA replacement does not do that. All it does is eliminate one horrible life-threatening defect. It does not change personalities, and the baby we hope will be born will have a usual father and a usual mother—one mother and one father—and the idea that they will have three parents is ridiculous.
Will it work? We do not know. There is a risk that it will not work. That is in the nature of science. In the earth-shattering paper produced by Crick and Watson in 1953, they were tentative and were not very sure about DNA, but they pressed on.
Will it be safe? We cannot say for certain that it will be safe. There is always risk, but the risk will be taken only with the informed consent of the parents, and if people had always avoided risk in this sphere and if in 1968 at Oldham general hospital Robert Edwards, Patrick Steptoe and Jean Purdy had not taken risks with the agreement of Mr and Mrs Brown, the first test-tube baby in the world would not have been born and the whole world would be worse off as a result. If the scientists are willing to take the risks and keep them to a minimum and the parents are willing to take the risks and take the advice, we should put the HFEA in a position to regulate and permit this technique so that it can be used when it and it alone, is convinced that it is safe. That is why I oppose tonight’s motion.
It is pleasure to speak in this debate, and I pay tribute to the work of so many, but particularly the Lily Foundation and the Wellcome Trust which have done a huge amount to prepare for this debate, to educate the public, to support Members of Parliament and to support some of the research.
I do not know, Mr Deputy Speaker, if you or others in this House have met people with serious mitochondrial disorders, but those disorders are absolutely awful. Cells fail to function, and people can get seizures, strokes, blindness, deafness, heart failure, lung failure and liver failure. Most of the people afflicted will not survive to adulthood. There is no treatment and no cure, and about 1 in 6,500 babies born will suffer from something like this. I would hope everybody in this House would want to stop that, and I simply do not understand how opponents of this can argue that they want to continue to inflict that sort of suffering on so many children, because that is the consequence of not finding a way to treat these disorders.
The hon. Member for Congleton (Fiona Bruce) expressed concern that there may be consequences for people who are helped in this way. Her first example was, I think—I am sure she will correct me if I am wrong—lower fertility. Now, that is possible—we will not know until we try it on people—but if I had a choice between a hideous disease that was likely to kill me before adulthood or the possibility of lower fertility, I know which one I would choose.
We also heard the comparison to eugenics. This is fundamentally different. Mitochondrial DNA is very different from nuclear DNA. It has a very different history, and it is a fascinating history—I used to work on mitochondrial DNA and other nucleic acids so I have some interest in this. This is not the same as eugenics, as the right hon. Member for Havant (Mr Willetts) explained well—it is good to have him in the Chamber, even if he is not in his former place.
We have heard arguments about multiple parents and the idea that this approach means that somehow there are three parents, but there are clearly two parents. I have not heard people say that if someone is given an organ donation and they have someone else’s organ inside them, they then have four parents because they have a lot of different DNA inside them which could interact. I think—I would hope—that all of us support organ donation, because it has saved many, many lives. Why should we not allow what is, in effect, mitochondrial donation?
We have heard the view that we should wait for there to be much greater safety. My mother had breast cancer a couple of years ago and she wanted to choose which of the two most modern treatments she should have. She wanted to know what the life expectancy was and whether she would live for 15 more years with either treatment. The answer was, of course, that we do not know, because with the most modern treatments we have not waited 15 years to find out. But I do not think any of us would say that we should not use any single cancer treatment that has been used this century because we do not know whether someone will live for 15 years after having it.
I agree completely with what the hon. Gentleman is saying. Does he agree that the motion would be better if it was asking for these enabling regulations to be hurried up? They will take into account, as much as one can, all the safety issues, and by delaying them we may be condemning more children to horrible diseases that could be prevented if we hurried this process up.
The hon. Gentleman is absolutely right, but I would improve the motion in a number of ways. I would not try to characterise Lord Winston’s position as being fundamentally different from what it is. I would also say that we need to have these regulations so that the tests can be done and so that we can go ahead with clinical trials and find out what happens in humans. I hope that the Government will introduce the regulations promptly. It has been useful to have this airing of views, but it will be helpful when we have the regulations before us to have that debate. This House will then be able to vote on whether or not to adopt the regulations.
May I assume—I am sure I am right in doing so—that this technique has already been trialled on mice and that the hon. Gentleman will know whether those trials have been successful? It would help the House if he could enlighten us about the success or otherwise of using this technique on mice.
I do not have a list of the organisms it has been tested on, but it has been widely tested on a number of organisms—I assume that mice are one, but I could not be absolutely certain—and has been successful. Obviously, if it was not successful on any other organism, it would be perverse to want to go ahead with it. However, I do not have details on the experiments with me.
I understand and appreciate that some people have genuine religious or ethical objections about interfering with an embryo. They are entirely welcome to make that case, but they should not claim other reasons as a cover for that. People are welcome to their ethical opinions—that is fine—but to say that we should not do this because we should wait indefinitely for more and more tests, so that we can be more and more sure before we ever try it in a human is simply to condemn more children to more pain and more anguish. That is not the right way to go. We do need to do more tests; there is much more to do before this will become a regular thing on the NHS and people can be saved—there is no doubt about that. But for that to happen, it has to be tested in humans—it has to be tested in children. We will help at that point, and I hope we will have children who do not have the sort of hideous problems we see now. I urge the Government to get on with this. We have to reduce the number of children who have these hideous conditions. The Government have the chance to reduce it and they should act promptly.
I thank the hon. Member for Congleton (Fiona Bruce) for securing this important debate. Some in this House are in favour of the treatment and oppose the motion, whereas others, like me, support the motion and oppose the procedure. The important thing is to have the debate and to put down a marker, and I hope that the Government do not try to rush these things through, as I believe they originally intended.
I am grateful to my right hon. Friend for that. I have been in this House since 2005 and this is the first debate I have had here on this matter, even though the consultation may have started in 2003. I will return to the issue of the consultation shortly, if I am able to do so in the four minutes and 10 seconds remaining to me.
There is no doubt that this disease affects many children—I believe the figure is one in 6,500—and has some horrendous and devastating consequences. However, the chief medical officer seems to believe that perhaps 10 lives a year might be changed as a result of this treatment. That is absolutely important for the 10 people involved and their families, but my understanding of the science is that it is very hard for the researchers to know who those 10 people might be and how to decide which children might benefit and which might not.
I agree with a number of speakers who say that two issues are involved. I have grave concerns about this from not only a moral, ethical point of view, but a public safety point of view. Whatever someone’s position on mitochondrial transfer, I am sure we must all agree that we cannot authorise new research techniques that are unsafe or might be unsafe. In this context “unsafe” does not only mean that procedures may not work; it means that they may result in disabilities and illnesses. To put it crudely, there is every possibility that we could be legislating to allow techniques that could cause damaged embryos, resulting in further damaged children. That is not spin; it is a reasonable assumption based on the available data. Newcastle university’s own paper concluded that, compared with control experiments, 50% fewer eggs fertilised through pronuclear transfer reached the blastocyst stage—in other words, pronuclear transfer is twice as likely to cause the embryos to fail. No further work was conducted on why so many of these embryos developed abnormally, despite consistent calls from concerned scientists.
Based on the available data, therefore, we cannot rule out the possibility that these techniques could cause the people born as a result to have illnesses or disabilities. The Government have a responsibility, as we all do, to avoid such eventualities, and we cannot take that lightly. We might not know the result for many generations. We might not know whether some damaged has been caused until three, four or five generations later. We simply cannot know that. Indeed, in a conversation I had with an hon. Friend in this House not a few hours ago there was talk of how science is about probabilities and risk; it is not fact but about what may or may not happen.
I am listening carefully to what the hon. Gentleman says, and the way in which this debate is being conducted shows the House of Commons at its best. He is one of the co-sponsors of this debate and he is speaking out of a great deal of fear about what might happen. Is his wish, in supporting the motion, to kick this into the longest of long grass or to see it stopped dead in its tracks? Will he be clear about that?
I can be even clearer than that, because it is neither of those things. I want further research done on the safety implications and I want the consultation to which my right hon. Friend the Member for Holborn and St Pancras (Frank Dobson) referred a while ago actually to be taken forward. Let us consider the polling the Government did. Their response to the consultation on mitochondrial transfer, published the day before the summer recess, tells us that
“700 expressed general support for the regulations and 1,152 opposed the introduction of the regulations with the remainder not expressing a view either way.”
Yet the same day the BBC quoted the Department of Health as saying:
“A public review into the three person IVF technique has been broadly supportive”.
That in turn enabled Dr Jeremy Farrar, director of the Wellcome Trust, to say:
“As the Government’s latest consultation has again shown, there is broad public support for making mitochondrial replacement therapy available to patients”.
That raises the question: in which world does 1,152 against and 700 in favour equate to “broadly supportive”? Does the Minister support her Department’s briefing that the consultation responses were “broadly supportive”? What further action does she intend to take to correct the highly misleading statement? Someone may think that the public were misinformed or that only a small group of people were responding and the responses were thus disrupted, but what is the point of having that consultation if no notice is going to be taken of it?
At the end of the day, there is concern about this matter. I have a concern—perhaps I am the only Member in this House who does—but if, as I fear, this legislation goes ahead in the autumn, I do not want to have to come back to this House to say to future generations, “Look what we did.” Once we go down this route and children start being born, there will be no turning back—[Interruption.] Yes, it is the power sell of the cell. There is not enough research on what the mitochondrial part does. Is it just a battery pack, or is it more? We just do not know. I do not want to have to stand up in this House and explain to generations of future children why we let them down.
Perhaps I could turn the last comment the other way round. I do not want to be standing here, or sitting at home in my dotage, saying, “Why didn’t we do something when we could have?” That is what we are looking at. We have the same problems with many issues relating to human fertilisation and embryos. We have heard these arguments in the House before. We have heard the speculation and the unsupported fears. Although I congratulate my hon. Friend the Member for Congleton (Fiona Bruce) on raising this debate, the scares that she raised are as unsupported as anything we have ever heard. I also congratulate my right hon. Friend the Member for Havant (Mr Willetts) on his contribution. He saved us an enormous amount of time because he covered the key points and nailed them to the floor. The right hon. Member for Holborn and St Pancras (Frank Dobson) reminded us just how long we have been examining this issue. Action is now overdue. I will now completely ruin the political career of the hon. Member for Cambridge (Dr Huppert) and say that I support him.
Today, we are talking about a real opportunity to help thousands of children by taking out of the system, over time, an inherited condition. We are talking about a gene transfer through nuclei, and the 0.1% that was mentioned is motor functional; it is not inherited genes. It is an opportunity to have two parents and not, as the media would have it, three parents.
The media has to take some of the blame. We have discussed these complex issues of fertilisation and embryos and so on, and the scaremongering has been appalling. There is scaremongering not only by individuals—I am not necessarily talking about the ones who write in green ink—but by the media. I was shocked to hear this nonsense about three-parent babies, on which the hon. Member for Cambridge touched. We are not talking about three-parent babies. This is an opportunity to put through these regulations. We are a bit early because we have not yet seen them or the results of the consultation. We have not even seen the Government’s reaction to them. None of us here—not even the hon. Member for Heywood and Middleton (Jim Dobbin) who spoke about the American situation—knows what will happen or is an expert on the matter. None the less there are experts who are reviewing this and coming forward with recommendations. They know and understand the subject a lot better than we do. We have to take their guidance and expertise. By the way, a comment was made about the Americans putting this matter on the backburner, but that was a different situation from what is under discussion now.
My hon. Friend is making his argument with characteristic force. I am just mindful that in the Library brief there was a particular insight from an evolutionary biologist suggesting that there was a real danger of DNA mismatching between the mitochondrial DNA and the nuclear DNA. Is he satisfied that the insights of evolutionary biology have been fully and adequately taken into account in this area?
If my hon. Friend looks at the research, I think he will find that that will have been looked at. From my limited knowledge—my knowledge is limited but it may be slightly greater than that of my hon. Friend—I suspect that such a mismatch would mean that the nucleus and the cytoplasm with the mitochondria would fail and an ovum would not be produced from it, but I could be wrong. I am speculating in the same way as my hon. Friend did. At the end of the day, we have an opportunity to change the rules to allow this research to progress. We must recognise that we have some of the best teams in this field in the world. We lead the field, and this provides us with an opportunity to continue to lead for the benefit of those many children. It will enable us carefully to continue with the research with the appropriate safety factors built in, so I am adamantly opposed to the motion.
Order. Before I call the next Member to speak, I should point out that although we have a four-minute time limit, it has been a lively debate with many interventions, so most people have taken five or six minutes. I will now have to reduce the time limit to three minutes.
I want to tell the story of a Stockton family with a vested interest in what happens in this Chamber today.
Baby Jessica Newall was carried into my advice surgery by my constituent and her uncle, Martin Holliday. He put her pram seat on the table and we were introduced. Jessica looked like any other young baby: pretty in pink and seemingly content. If it had not been for the feeding tube disappearing into her nose, I would never have known that there was anything amiss. She brought her mum, Victoria, and her grandparents. They were there to win my support for mitochondrial replacement technique, which would help ensure that everything possible was done to minimise the possibility of a baby being born with faulty mitochondria and having to suffer as I am sure Jessica does.
I listened carefully to Jessica’s mum who very calmly and with great personal strength told me Jessica’s story. Jessica will not live much longer—perhaps only a year or two. She cannot be fed naturally and relies on a feeding tube. Her body will not develop, which means that she will not grow and her internal organs will deteriorate. She cannot communicate like other babies. Perhaps worst of all, Jessica often wakes up screaming in terror and there is nothing her parents can do but hug her and comfort her.
Victoria told me that there is no cure or treatment. She went on to tell me about what she saw as the answer for giving women like her a chance to have a baby without the substantial risk of that baby suffering from the disease. I know that we cannot make decisions on the basis of emotion, and yes, Jessica’s story is heartbreaking and charged with emotion that would affect any caring person, but it is also an accurate factual story demonstrating the devastation that mitochondrial DNA diseases can cause. That demands action from Ministers and this House of Commons.
We also need that positive action for many other reasons too. Even in less severe cases, mitochondrial disease can have an overwhelming impact on families, and the Government’s consultation recognises the
“painful, debilitating and disabling suffering, long-term ill-health and low quality of life”
that all too often result.
The north-east England Stem Cell Institute described these disorders as
“a cruel class of inherited disease, because serious, even life threatening conditions are coupled with great unpredictability about how future children will be affected.”
There is no cure, but there has been lots of research and we have seen some progress in this area. It is an inescapable fact that medical advances such as these will trigger ethical conundrums and challenge us actively to consider how we perceive the sanctity of life. I agree that there are safety issues. This is not without risk, but if we are to avoid this horrific suffering in the future, we need the regulations now to make the necessary progress and help ensure that we do not have more babies like Jessica.
It is a pleasure to follow the hon. Member for Stockton North (Alex Cunningham) who gave us that moving account of Jessica. That account has also raised other matters in relation to the principles and the ethics of the issues with which we are dealing. In 2008, I was involved in the scrutiny of the Human Fertilisation and Embryology Bill and the Joint Committee and I still bear the scars. We are focusing here on public safety. We are not doing that as a guise, as some hon. Members have wrongly suggested. The focus is on safety, because that is what Parliament intended to be the case. We need to be absolutely satisfied about the safety of the process. Concerns over the painful, debilitating, serious mitochondrial diseases have been well made, but we must consider safety.
The hon. Member for Cambridge (Dr Huppert) says that we need an honest debate. He quoted Lord Winston, who said—the Government need to take heed of this when they seek to make some redefinitions—that mitochondrial transfer is genetic modification, and that modification is handed down the generations. Lord Winston said that it was totally wrong to compare it with a blood transfusion or a transplant and that an honest statement might be more sensible and encourage public trust.
The point is that Parliament intended to proceed cautiously and not in the permissive way suggested by some in 2008 who said that we did not need regulations and should just let the HFEA get on with it. The idea was that the question needed to be explored carefully. The Minister at the time, the right hon. Member for Bristol South (Dame Dawn Primarolo), said:
“there are so many questions that we cannot yet answer, the Bill provides for the principle…They can be drafted only when the research is at a more advanced stage.”
That deals with why this has taken so long, as the research was not at a stage to allow the regulations even to be drafted. We must also take heed of the fact that the then Minister also said:
“The Bill provides the flexibility for further consideration by the public and Parliament, and for the specific details of the techniques to be specified in regulations.”
That is where we supposedly are now. She went on:
“More importantly, the Bill allows that once the safety of the technique is established and not before.”––[Official Report, Human Fertilisation and Embryology Public Bill Committee, 3 June 2008; c. 25.]
That was the intention of the Minister at the time and I hope that it is the Minister’s intention now.
My hon. Friend is making a thoughtful and powerful case. My concern is that if the implications are not fully understood, instead of dealing with the legitimate concerns of all the parents of children who are suffering greatly, we risk creating even worse conditions in future generations.
My hon. Friend makes an important point. We recognise that this is not an uncontroversial technique similar to blood transfusion. It is controversial, and we must recognise that if we want to bring the public along with us. We must also recognise that, as my right hon. Friend the Member for Havant (Mr Willetts) said, we would be leading the way in scientific advancement, but we would be leading the way not just because of scientific development but because other countries had considered the ethics, complications and risks and said that they were not going to go down that route. Some might say that we are out there at the forefront, but others might say that we are out there on a limb.
On 22 July, the Minister responded to the consultation by saying:
“We wanted everybody with a view on the regulations to comment and the majority of people were positive.”
We have heard from the hon. Member for Stoke-on-Trent South (Robert Flello) that there is another view. The Minister went on:
“We will now progress with our plans.”
Given that I was present during the scrutiny of the Human Fertilisation and Embryology Bill, I would suggest that the then Government—I had much against them as regards the Bill—clearly intended that safety must come first. The issue is not whether the majority want it or who has the loudest voice—scientific or otherwise—but about safety. We need to be convinced so we must take heed of the HFEA, which says that although we have had the detailed submissions,
“Let us be clear: safety is and will always be of paramount importance...progress being made towards safety in this area”.
Progress is being made towards safety, but we are not there yet. The HFEA agrees that further research is needed. Pre-clinical data and research need to be considered, and that must all happen before we progress further. I urge the Minister to take heed of the concerns and to proceed only after we are clear about safety. We are not there yet.
Those who have spoken against the motion have said that they want people to be honest and that they want the truth, but when they have bandied around quotations from Lord Winston they have obscured the truth. Lord Winston’s position is clear, and he is for this type of research, but he made one thing abundantly plain. He said that this
“is genetic modification and is handed down the generations.”
He was honest and called it what it is. He went on to say:
“It is totally wrong to compare it with a blood transfusion or a transplant and an honest statement might be more sensible and encourage public trust.”
We have such anger and confusion about the issue because of that deliberate deceit and dishonesty, and the House should take cognisance of that.
The other tactic that has been deployed is to felon set, to emotionally blackmail and to say to people such as the hon. Member for Congleton (Fiona Bruce), “You have inflicted”—these are the words used about her by the hon. Member for Cambridge (Dr Huppert)—
Yes, you did. Check Hansard. You said, “You have inflicted this disease on people.”
The debate has got very personal—it has gone into that realm—and people are trying to felon set, to emotionally blackmail, to emotionally charge the debate and to say that people are, to quote another Member, scaring us into opposing this. We must be abundantly clear that such emotional blackmail should be removed from the debate. There should be an honest debate and we should be allowed to discuss the ethics and to put on the table our views, including our moral views.
Does the hon. Gentleman agree that the complete lack of evidence on the possible outcomes as these children grow up and have their own children, with females passing on their genetic code to children, means that the technique should not be proceeded with at this stage?
Some of the pre-clinical tests were completed only in June. It is impossible even to read the detail of them, yet we have a mad rush from some people to proceed. I am not standing in the way of that, but saying that we should do so on the basis of solid, sure and grounded evidence, not emotional blackmail and emotionally charged arguments. The evidence therefore becomes critical. We should be allowed to consider it and we should allow the evidence to emerge post-pre-clinical testing and examination.
There have been two public consultations and I heard one Member dismissing them, saying that all the letters were the same. I can tell the House this: if the letters had all been the same and the majority view had been the other way, the same Member would not have been saying that tonight. He would be saying, “Oh look, the public are with us. The consultation’s there.” The Department of Health consultation is against this proposal and so is the consultation by the HFEA. The ComRes polling moved dramatically between February and August from a wafer-thin majority of 35% of people in favour of the proposal to an overwhelming majority of 55% or so opposed to it. That is a huge landslide.
Honesty should return into the centre of the debate and we should have a full, frank discussion. Let me be clear about my position, as people will ask about the ethical position. I come from a moral stance. I share the psalmist’s view that we are “fearfully and wonderfully made”. We should stand in awe of that and praise the great creator for it, but that should not preclude us from having a proper debate. Other Members have mentioned colleagues or constituents who have had children brought in front of them and I, too, have a constituent who wheeled a little child in front of me. Her words ring in my ears today. Despite all the hurt, all the heartache and all the pressure, tears and anguish for that family, the words of the mother were very clear, “Ian, I would not change this for one moment.”
There has been a great deal of controversy over the past few decades about genetically modified plants and crops. Through the march of applied sciences and advances in agriculture we have managed to feed billions of people, but I am sure that all Members will agree that we are dealing with entirely separate issues when we talk about genetically modified food and what we are dealing with now, which is genetically modified people. We have only in the past 100 years come to terms with the debilitating, restrictive and oppressive results of centuries of racism buttressed by pseudo-scientific notions that have since been proved entirely false. How much more of a problem will we be confronted with when humanity is divided between the modified and the unmodified?
I say to my right hon. Friend the Member for Havant (Mr Willetts) that mitochondria contain DNA. They are present in every cell in the body and just because they are not nuclear does not mean that they are any less an integral part of a human being. The mitochondria that contain DNA interact with the nucleus and many scientists therefore believe that they contribute material to the identity of an individual. Bioethicists have up until this point expressed almost universal consensus on germ-line genetic modification of our fellow humans, rejecting it as grievously immoral and completely unethical. The consensus is worth pointing out as we must know what the proponents of mitochondrial transfer are asking us to dissent from. They are asking us to dissent from opinion in every other country in the world. In this age of globalisation, we will be divorcing ourselves from the entire community of nations in terms of bioethics. Do we really want to become a rogue state in terms of bioethics?
No one can deny the debilitations and hardships that these diseases cause. No one is seeking to downplay that suffering, but this is not about a cure. This will neither heal nor cure a single human being suffering from these diseases. What is worse, when we talk about pronuclear transfer, is that that effectively requires the creation of human beings for the sole purpose of harvesting their useful parts. Is that really the sort of society in which we wish to live, in which persons—individuals—are created, their parts harvested and then destroyed, merely to provide for other human beings? There is no way that that can be considered ethical, whether in terms of purely rational deductive natural law, or by the system of Christian ethics on which we in this country have traditionally relied. I hope hon. Members on both sides of the House, and from every part of the spectrum from right to left, can unite on that point. I support the motion.
I am proud that in Newcastle upon Tyne Central, my constituency, Newcastle university has pioneered research into variations on IVF treatments and procedures that can prevent the transmission of the genetic mutations that cause those devastating disorders. We also have victims of that devastating disease in Newcastle, such as Lily Cass, who is in her 70s. Some days she can hardly move due to a lack of energy caused by her faulty mitochondria. It takes all her strength away. She has four children, including a daughter, who is likely to pass the disease on to her children. She worries about that all the time. For those women and their families, the most important help we can offer are those potential treatments.
I want to focus on the so-called three parents issue. The embryo would carry just 13 out of 23,000, or 0.056%, of the genetic material from the mitochondrial donor. As the right hon. Member for Havant (Mr Willetts) said, it is not the nuclear DNA, so the child’s appearance, personality and other features are not affected. In Britain, the egg donation and surrogacy principle, whereby more than two parents can contribute biologically to the birth of a child, is already recognised. Medical procedures that introduce a donor’s biological material are also long accepted. The headlines, such as the BBC’s recent “Mum plus dad plus mum”, are not only sloppy and sensational, but unscientific. I would like the BBC’s other programme, “More or Less”, to comment on whether giving 0.056% of genetic material and 0% of nuclear DNA really constitutes being called “mum”.
The UK is carrying out pioneering research on mitochondrial diseases. This country has the opportunity to be at the leading edge of the world in preventing such terrible diseases. It has taken us years to get to this point. Never before has a technique had such rigorous investigation, and ethical and scientific analysis. It is therefore incredibly important that progress does not stall.
Like other hon. Members, a constituent, Clare Exton from Newhall, came to talk to me about this issue. She is a vibrant lady and was on a mission. As a listening, caring MP, I was happy to listen to her story. She spoke to me about the charity work she does, the self-help group people have built up together, and the social functions they perform in giving one another support at such a difficult time. She was the one who first told me about how tantalisingly close the opportunities for the new science were.
I admire my hon. Friend the Member for Congleton (Fiona Bruce) so much—she is a lady of such high moral standards and ethics that it almost pains me to tell her that I cannot support her motion—but the big prize is the new science we have heard about. The arrangements that the HFEA will put in place so that there will be no doubt whatever that the science is telling us the truth are massively and incredibly important.
I believe that this is a time in science and in the Chamber at which we ought to do the right thing. I have absolutely no desire to annoy any of my friends who have truly, deeply held religious feelings, because I think that, if they were shown this in black and white, they would still not agree. That is fine—of course it is—but we are making our constituents suffer, and it carries on year after year. It does not need to be like that. I am sure the Minister will describe the safeguards. That is all I want to say. I believe that our constituents deserve this chance.
This is a fascinating debate. I should like to place on the record a definition that has not been used:
“Mitochondrial donation is a fundamentally humanitarian intervention designed to help people affected by a devastating disease to fulfil one of the most basic human aspirations: to have a healthy family.”
Regrettably, I cannot claim copyright on that, because it belongs to the Wellcome Trust, so one of the pre-eminent organisations on scientific research in this country very much supports the regulations that will come into force.
It is a pity that the debate is polarised because of the different views on the ethics of intervention. Although it is legitimate to explore the ethical issues, one should do so without misusing the scientific evidence. I fear that that is what is happening.
It is clear that safety is at the heart of the proposals. The hon. Member for Congleton (Fiona Bruce) referred to the HFEA. When we pass the regulations, safety will remain of paramount importance, as it always has been. The technique has received unprecedented scrutiny by the HFEA’s specially convened expert review panel. Never before has a new medical technology been subjected to such thorough investigation—my right hon. Friend the Member for Holborn and St Pancras (Frank Dobson) described the history.
It is clear that, if Parliament passes the regulations, it will not immediately become possible for clinics to treat patients using those techniques. When the regulations are passed, responsibility will pass to the HFEA, which will decide, based on safety and efficacy evidence, whether or not to license individual applications for use. That tried and tested process has been used over a number of years. My point is that we decide the ethics, and the HFEA determines the specific use.
Nothing is being rushed. We have been going on for such a long time, but time is precious—it is precious to those potential parents. Let us not waste time today, and let us reject the motion.
I rise to urge the Minister not to delay bringing forward the regulations, and I urge the House not to lose sight of the children and their families who are devastated by mitochondrial diseases. Of course it is absolutely right that the House debates the ethics, as so many Members have pointed out, but at times the language used has clouded those arguments. We have heard terms such as “eugenics”, “three-parent babies”, “designer babies”. This is not about wanting to create a child who is more beautiful or more intelligent. This is about wanting to spare families and children from a lifetime of devastating medical problems. We have the potential to do that. I fully respect those who oppose this on ethical grounds—they are entirely consistent in their view—but I am concerned that there has been selective misquoting from the scientific evidence. The House is not really qualified to examine the evidence in detail, and that is why we have expert panels, and bodies such as the HFEA, to advise and regulate this, and they do so with a great deal of thoughtfulness and expertise.
We have to be clear that the third scientific review, the expert panel, which I regret has been selectively misquoted, has looked at that evidence and has concluded that it does not show that the technique is unsafe. We will not know whether the technique is effective until we allow trials in a human context—it may be that there are complications; we have to be honest about that, and we have to be honest that this is not the same as a blood transfusion—but we do know absolutely for certain that families and children are suffering now from these diseases. That is why, on the balance of the safety issues and the advice from the expert panels, we should not reject this on safety grounds.
The point made by the hon. Member for North Antrim (Ian Paisley) about the child sitting in front of him in his surgery whose parents would not change that child was particularly powerful. No one is asking to change a child. What we are asking is for future generations of children to be spared that part of them that creates the suffering, but to keep within them all the personality and everything else in their genetic make-up that makes them who they are.
I am also concerned to point out that if I were to donate my mitochondrial—
I rise to speak only on behalf of my constituent Margaret Evans. Margaret was unfortunately forced to move into Picton Court care home in my constituency. I was contacted by her sisters, Val Thomas and Mrs Pitt, who live in the constituency of my hon. Friend the Member for Ogmore (Huw Irranca-Davies), who asked me to meet Margaret to see how mitochondrial disease affects their family. They talked to me about four generations of women who have suffered massive disfigurements. Often they are unable to move their heads because of huge growths in their necks, which require surgery to remove them. Often they are unable to move limbs because the limbs give way and the energy is not there to do so. Breathing can be difficult. The human cost, the human suffering, the disfigurement they experience is horrific.
What affected me most was Margaret Evans telling me that her young daughter, aged seven, is already saying, “Mum, will I end up like that? Am I going to have to suffer this? Will this happen to me?” No child should have to ask such questions when we in this House have the opportunity to change their future to one that will not include suffering, pain and disfigurement. I urge that we move this forward. Let us make a decision. Let us be brave. Let us give an opportunity, a chance of hope, to these families.
We have heard many stories today about the potential of mitochondrial replacement for women with mitochondrial conditions, possibly allowing them to have children without these conditions. But the hon. Member for Congleton (Fiona Bruce) and others have put forward the safety issue and the need to make sure that there has been a full investigation. This might seem like fantastic news, but just because the HFEA expert panel has not found evidence to say that mitochondrial transfer is unsafe does not amount to saying that the evidence proves it is safe either, as the potential risks of the techniques required are not yet fully understood.
The controversy surrounding genetically modified food comes to mind: it teaches us a number of important lessons. In a paper submitted to the “Science as Culture” conference in 2008, several academics asserted that
“the GM experience represents a warning, a cautionary tale of how not to assess an emerging technology and allay public concern.”
Clearly, there is some evidence to show that we need to look at this again.
The UK is the only country that is considering permitting these techniques. In the USA, the Food and Drug Administration held hearings where concerns about the safety of the techniques were explored. Some even consider the lack of international consensus as a sign that the UK is moving too quickly, and I must admit that I, along with many others, share that view.
The Government have sought to justify ignoring the clear majority against the techniques on the basis that respondents to public consultations are from self-selecting audiences, but I say to the Government, “Ignore them at your peril.” It would be foolish to dismiss responses to public consultations on any subject in such a cavalier manner, but when we are dealing with concerns regarding the public safety of what is in effect a new biotechnology, and when the memory of the GM food debacle is still fresh in the public memory, the strategy is exceptionally foolish.
It is important that we consider these matters in their full detail. It is in this regard—mindful of the need to avoid at all costs any sense of rushing and of ignoring public opinion post the GM food saga—that difficulties surrounding the approach of the Department of Health are thrown into particularly sharp relief.
According to a poll conducted by ComRes in February, 35% supported the technique and 34% were against it, but in a matter of six months those figures changed to 18% in support and 46% against. That extraordinary loss of support in a very short period highlights that the cavalier approach of the Department of Health is very risky and dangerous.
At the very least, the Government should reassure the public by making it absolutely plain that they will not rush into laying any regulations before this House or anywhere else until all the pre-clinical experiments recommended by the HFEA in its three safety reports to the Secretary of State have been concluded. Only then will we be able to move forward.
May I first place on the record my thanks to the hon. Member for Congleton (Fiona Bruce) and the other sponsors of this debate for securing the time from the Backbench Business Committee to ensure that the House can discuss such an important issue? I also hope that my hon. Friend the Member for Liverpool, Wavertree (Luciana Berger) will get well soon: she should have been closing this debate on behalf of the Opposition, but unfortunately she is not well today. Some people have greatness thrust upon them and I have had to do two Back-Bench business debates this afternoon.
I also thank all hon. and right hon. Members for their contributions throughout the 90 minutes that we have had to discuss this very important issue. We have had no fewer than 19 Back-Bench contributions, which have all been of incredible quality. The impassioned and thoughtful considerations we have heard are a testament to what a sensitive and complex matter this is. As my hon. Friend the Member for Stoke-on-Trent South (Robert Flello) said, it is important that we have this debate, wherever one comes from and wherever one arrives at, and that the House of Commons discusses these issues.
On the one hand, we have celebrated the triumph of science that these new techniques represent. As my hon. Friend the Member for Newcastle upon Tyne Central (Chi Onwurah), the hon. Member for Hexham (Guy Opperman) and the right hon. Member for Havant (Mr Willetts) have said, it is thanks to years of pioneering research at the university of Newcastle into how we can prevent the transmission of genetic mutations that we are finally reaching the point at which we can consider using these transformative techniques in humans. We have within our reach the possibility of eradicating mitochondrial disease from families who have been blighted by it for generations—families who have endured a disease for which there is no cure, who have suffered daily battles with painfully debilitating symptoms and who have lost their children prematurely.
Does the hon. Gentleman accept that those of us who remain uncertain about the proposals share the exact same concern as those who support them about those who suffer from mitochondrial disease? That should never be forgotten: the concern of those of us who are uncertain about the proposals is every bit as great.
I absolutely agree. I have to say that I do not often agree with the hon. Member for Cambridge (Dr Huppert), but he made the very important point—one of many in his speech—that whether people are coming from a scientific perspective or a religious one, their views are equally important in this debate. I am very glad that both sides of this debate have been able to air their views.
Of course, families have had to face up to the risk—perhaps the certainty—that to be a parent will come at the expense of a difficult and, in too many cases, painful life for their children. On the other hand, we have grappled with the undoubted ethical and moral questions raised by the proposed introduction of such techniques. Some hon. Members have shared their anxiety about the uncharted territory we are now in, but that has been good for the public debate. Indeed, the proposed regulations would make Britain the first country to legalise mitochondrial transfer, and scientists have acknowledged that there will always have to be a leap of faith when the technique is first used.
It is important that all these arguments are debated at length and given full and proper consideration, but it is also critical for the integrity of the eventual decision that the debate should be based on the facts. When debating such matters, we will naturally hear a number of contradictory assertions. I hope that the Minister can reassure the House about some of those issues we have discussed.
The first concern raised is that the process has been rushed through. Anybody involved in the development of the techniques would disagree that this has moved quickly. Indeed, my right hon. Friend the Member for Holborn and St Pancras (Frank Dobson) pointed out that the consultation on the process began in 2003. It was more than six years ago—back in 2008—that the Human Fertilisation and Embryology Act 1990 was amended to introduce powers to allow regulations to be brought forward to enable mitochondria replacement to take place. It was back in 2010 that researchers at the university of Newcastle developed the techniques to avoid diseased mitochondria being passed from a mother to her children, and it was not until after another three years of consultation and review processes that the Government announced in July that they would introduce regulations to enable mitochondrial donation techniques to be used. As we have heard, expert scientific review panels in April 2011, March 2013 and June 2014 found no evidence to suggest that the techniques are unsafe for clinical use.
If Parliament passes the regulations, specialist clinicians will have to obtain a licence from the HFEA to use the techniques. A licence will be granted only once the HFEA, operating case by case, is satisfied that any risk of using the techniques is low. I hope that the Minister will provide the House with more detail on the robust process that has been followed for us to reach this point. I ask her to set out the further safeguards built into the regulations to guarantee that the decision to use these techniques cannot be taken lightly.
We have heard concerns that allowing mitochondrial donation is a dangerous road to start down, and might lead to designer babies and parents being able to select the physical characteristics of their children, which I would find absolutely abhorrent. However, we have also heard that those fears do not take into account that the regulations are very specific and cover only mitochondrial DNA, not the nuclear DNA that determines our physical characteristics, as was so eloquently outlined by the right hon. Member for Havant. We are talking about the use of these techniques only in the clearly defined situation of incurable mitochondrial disorders.
The fact that the techniques apply only to the mitochondrial DNA and not to nuclear DNA should provide further reassurance to hon. Members who are concerned that the process will result in three-parent babies, as my right hon. Friend the Member for Holborn and St Pancras said. As we have heard, mitochondrial DNA controls only mitochondrial function and energy production; it is important to point out, as many hon. Members have done, that nuclear DNA, which makes us who we are and determines appearance and personality, is not altered by the proposed techniques. The Nuffield Council on Bioethics conducted an ethical review, which concluded that by “societal norms”, mitochondrial DNA
“does not confer genetic identity.”
Again, it would be helpful if the Minister put it on the record that children who are born from mitochondrial donation will have two biological parents and one mitochondria donor.
Finally, I come to the issue of safety. There have been questions about the safety of the techniques. Again, we must be sure that we base our arguments on facts. Comparisons have been made with the cytoplasmic transfer techniques that were used by a private fertility clinic in the United States in 2002 and the current investigation into the health of the children born from that process. However, this is a fundamentally different technique, as the hon. Member for Mole Valley (Sir Paul Beresford) suggested.
There are other safety concerns that apply directly to mitochondrial donation techniques, and those must be examined in detail. As we have heard, the technique has received unprecedented scrutiny by the HFEA’s specially convened expert scientific review panel. The question for us is whether the benefits of preventing the transmission of mitochondrial disease and the likelihood that children will continue to be born who will die in infancy outweigh the risks of the techniques. The scientific community and the families experiencing mitochondrial disease say that they do. It is now up to Parliament to decide whether it agrees.
We are approaching the final stage in what has been a long and considered process, and we cannot delay it any further. Time is precious for the parents who are at risk of passing on mitochondrial inherited disease to their children. The research has been done, the reviews have been carried out, and the experts and the public have been consulted. The arguments have been made and the families are waiting. It is time for us to make a decision.
I congratulate my hon. Friend the Member for Congleton (Fiona Bruce) on securing this debate at the Backbench Business Committee and all the right hon. and hon. Members who have contributed. It has been an extremely thought-provoking debate. Inevitably, in the time available to me, which I believe is 10 minutes, I will not be able to do justice to every point, but I hope that Members know that if there is a point that I am unable to cover in my remarks, I will follow it up afterwards and attempt to respond to them.
I welcome this opportunity to discuss mitochondrial donation and to reflect on the scientific and policy journey that has brought us to this point. As many Members have said, children are being born with and are dying from devastating conditions that are caused by mitochondrial disease. Scientists and clinicians have developed a treatment to tackle it but, rightly, Parliament will need to approve new regulations for it to be used.
As Members have said, this is not a new subject for Parliament to be debating. In 2008, Parliament agreed amendments to the Human Fertilisation and Embryology Act in anticipation of these groundbreaking developments. That provided a power to introduce regulations that would allow mitochondrial donations. It is that next stage that is the focus of our deliberations.
I will explain the thorough and open approach that has been used to assess the safety and efficacy of the proposed donation techniques, and to gauge the public’s views. This has not been a rushed process and I do not agree that Parliament is being asked to vote blind, as some have said—far from it, as others who have been in this House for longer than I have testified. We have asked the HFEA to convene a panel of experts three times since 2011 to review the scientific evidence on the safety and efficacy of the proposed donation techniques. All three reviews have indicated that the donation techniques—maternal spindle transfer and pronuclear transfer—would be effective, and all three reviews have found no evidence to indicate that either technique would be unsafe. To quote the chair of the expert panel, Professor Andy Greenfield, whom I have met to discuss the reports:
“In three years’ study the expert panel has seen no evidence which suggests that these new mitochondrial replacement therapies are unsafe.”
However, I appreciate that some Members have expressed concerns. Some are opposed in principle and some have practical concerns about whether we have looked at all the important details.
The decision on whether a new treatment can be described as safe is never absolute, as Members have said. Doctors and scientists rarely, if ever, make an unqualified statement that a procedure is safe. Instead, they proceed by hypothesis, evidence and risk analysis. Indeed, no medical procedure is without risk, from a cataract removal to a triple heart bypass.
There have been calls today for more research into mitochondrial donation, but research cannot be expected to answer every question. All that we can ask is that it adds to our knowledge and highlights areas that need to be looked into further and monitored more closely. We are currently considering the most recent report of the expert panel, the assurances that have been given on the safety and efficacy of the techniques involved and the recommendation of further experiments to confirm earlier findings.
The draft regulations to allow mitochondrial donation, on which we consulted, would also bring into place important safeguards, as others have said, through the HFEA’s strict licensing procedures. For a licence to be issued to a provider of mitochondrial donation, they would first have to demonstrate that they could carry out the procedure safely and effectively.
It has been said in the debate that we are not creating three or four-parent families, but given that the cells of a second mother will be used, will a child have a legal right to know the identity of the three or four people who contributed to their creation?
That was one area of detail covered in the draft regulations and the responses to the consultation on it, and I will write to my hon. Friend with a detailed response. A wider point is that we should surely not reduce the notion of parenthood to genes. Many Members who have spoken in the debate, particularly my hon. Friend the Member for Congleton, who moved the motion, have often spoken in other contexts about parenthood being more about loving, nurturing and so on. It cannot be reduced simply to the donation of genes—I worry that that, in itself, would be a slippery slope.
Mitochondrial donation is supported by both the chief medical officer, Professor Dame Sally Davies, and many clinicians and IVF experts, including, I am pleased to say, Professor Lord Winston, who has been quoted a number of times in the debate. Among other comments, he has made it clear that he supports the draft regulations and would vote for them.
This is undoubtedly a really difficult area in which to gauge public opinion, because it is complex and technical and a lot of people know nothing about it. Some Members who have seen e-mails going around the House asking them to attend this debate have told me that they did not know what it was about. That means that the exercise of engaging the public needs to be carried out in a thoughtful and comprehensive way. That was exactly what the Government did—we tested the public acceptability of introducing these techniques through a comprehensive dialogue process commissioned by the HFEA and led by external experts. It included events such as workshops and focus groups, and it showed that when the process of mitochondrial donation was fully explained to them, the majority of people supported its use provided that it was carefully regulated. The Department of Health’s consultation was on the draft regulations, and those who commented on them broadly supported them. I urge people to be mindful of the way to go about testing public opinion on the matter. We have to ensure that it is done on the basis of facts.
I am really sorry, I just do not have the time to give way. I am not being discourteous.
Successive Governments have responded to advances in science that were controversial in their day. Time does not permit me to go into them in as much detail as I would have liked, but many Members will cast their mind back to the debates about IVF. I suspect that there are Members in the Chamber today who were extremely wary of IVF techniques but who have written to me in the past year asking me to help infertile couples in their constituency. We were told in the debates on IVF that the proposal for limited research on embryos, up to a maximum of 14 days’ development, was a slippery slope and that the 14-day rule would become 20 days, 50 days or even six months. Today, 25 years on, the Rubicon remains uncrossed and the important provision that research cannot take place on embryos more than 14 days old, which Parliament put in place, remains firmly in place. I hope that that gives Members some reassurance.
Mitochondrial donation will enable people to have their own, genetically related children, free of serious mitochondrial disease. The proposed donation techniques will allow unaltered nuclear DNA to be transferred only to an egg or embryo that has unaltered healthy mitochondria. I could not have put it more eloquently than my right hon. Friend the Member for Havant (Mr Willetts) did when he talked about the difference between nuclear and mitochondrial DNA.
On the issue of three parents, I mentioned—as have others—that we cannot reduce parenthood to a matter of 37 genes from a donor. It is about so much more than that, and our draft regulations refer to some of the safeguards in place.
There is no cure for mitochondrial disease, nor is there one on the horizon. The families of children born with severe mitochondrial disease face the prospect of having to watch their child suffer dreadfully, and in many cases die at an early age. Many Members have met constituents in recent months—as have I—who are facing that heartbreaking situation, and I pay tribute to the Lily Foundation for its work in helping us all to connect with those constituents.
This has been a thoughtful debate, and it is vital that Parliament discusses such matters openly and considers all the issues. For those who are not opposed in principle, we must consider all the evidence alongside the benefits that this treatment can bring, and make that consideration in a rational way. The Government will, of course, continue to consider the expert advice we have received and how that influences regulations before they are brought before Parliament for further debate. We believe that this is an important scientific advance that holds out great hope for families in this country and around the world.
I thank all hon. Members who have contributed to this debate. The number who have contributed and the serious intent and concerns expressed highlight the grave concern that Members feel about this issue, which I believe reflects public concern. That is why it is so important that the final decision on this issue is brought back to the House. Full debate and consideration should be available to us after the critical research recommended by the Human Fertilisation and Embryology Authority has been conducted, published and peer reviewed.
My hon. Friend the Member for South Derbyshire (Heather Wheeler) said that we should listen to the science, and that is precisely my point. It is said that the Government intend to lay regulations this autumn, before the pre-clinical research recommended by the HFEA in its three reports has been concluded, written up and assessed in peer reviewed journals. I simply say that it cannot be right to ask the House to make such a decision before the tests have been concluded. As my hon. Friend the Member for Enfield, Southgate (Mr Burrowes) said, there has always been an understanding that we must proceed only when the safety of these issues has been properly assessed.
As a mother, I know that no mother would want to conceive a child with mitochondrial disease, but neither would they want to conceive a child with potential genetic abnormalities because adequate safety tests on maternal spindle transfer and pro-nuclear transfer were not carried out.
Question put and agreed to.
That this House takes note of the Human Fertilisation and Embryology Authority’s most recent scientific review into the safety and efficacy of mitochondrial replacement techniques which highlights concerns for subsequent generations of children born through maternal spindle transfer and pronuclear transfer; welcomes the recent comments of scientists including Professor Lord Winston that, prior to the introduction of such techniques, more research ought to be undertaken and a full assessment conducted of the potential risk to children born as a result; and calls upon the Government, in light of these public safety concerns, to delay bringing forward regulations on mitochondrial replacement.
It is in order to ask the question. I cannot give the hon. Lady an answer, but I have heard what she said, and I am sure that those who were involved in that have heard what she said. If the noble Gentleman was not consulted, I would consider that to be most discourteous.