(6 years, 3 months ago)
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Baroness Deech
That this House takes note of the 40th anniversary of the first baby born using in vitro fertilisation.
Baroness Deech (CB)
My Lords, let us celebrate the birth of Louise Brown in July 1978, a revolution in reproductive science and a British first due to the work of Dr Robert Edwards, a Nobel Prize winner, and Dr Patrick Steptoe. The government response was to establish a committee, chaired by Baroness Warnock, to look into the repercussions. Her 1984 report of the Committee of Inquiry into Human Fertilisation and Embryology paved the way for the establishment of the Human Fertilisation and Embryology Authority in the 1990 Act. Baroness Warnock famously said:
“People generally want some principles or other to govern the development and use of the new techniques. There must be some barriers that are not crossed, some limits fixed beyond which people must not be allowed to go. A society which had no inhibiting limits, especially in the areas of birth and death, of the setting up of families and the valuing of human life, would be a society without moral scruples, and this nobody wants”.
These should continue to be our guidelines for the future, whatever it holds.
As well as establishing the HFEA, which I had the honour to chair for seven years, the 1990 Act provided for the licensing and storage of embryos, a database, and the use and donation of gametes in treatment and research. The 2008 Act provided further for research on embryos, for same-sex and unmarried couples, surrogacy and a ban on sex selection.
The UK is a world leader in embryology and IVF. Our regulation, which is studied in many other countries, has provided responsible conditions for research and has safeguarded the health of parents and babies. This is the opportunity to thank the Lord Speaker, in his earlier incarnation as the Secretary of State for Health, for getting Baroness Warnock to write the report and for kick-starting the whole process. It is an example of his forward-looking attitude to public health. The noble Baroness, Lady Bottomley, also played an important part in getting the Bill through.
Fortunately, the HFEA has survived at least two attempts to get rid of it by amalgamation. It has stood the test of time and provided a safe haven for new developments like mitochondrial donation. A few limitations will be noted, but we should celebrate the overall success of this British achievement—a magnificent anniversary for the potential of parenthood and for the prospects that embryo research have opened for good health. More than 8 million IVF babies have been born worldwide, 300,000 of them here. By 2100, 3% of the world’s population may be due to IVF. One in six couples has fertility issues. Some 41% of treatments are on the NHS, but availability varies by region for financial reasons. Only 24 clinical commissioning groups offer three cycles of IVF, in line with the NICE guidelines, while seven offer none at all. Moreover, the conditions applied by those that do offer IVF vary, such as being under a certain age or not already having children.
What happens if you have to pay privately? The cost is exorbitant. The HFEA has no remit over price. The cycle of treatment can cost up to £5,000 and there are stories of pricey add-ons being offered without proof of their efficacy. Many people go abroad for treatment because they are deemed unsuitable here, because of the cost, or to avoid the identity of the donor ever being disclosed. There is freedom of movement for such services, but the standards applied in other countries may well be inferior to ours—for example, in screening sperm for disease. They may be more lax about the use of multiple embryos, resulting in a multiple pregnancy. The woman treated abroad comes home to deliver, say, triplets in a UK hospital with the attendant expense and risk that comes with triplets.
The estimated cost of providing full NHS fertility services is £77 million. This would be money well spent because cuts in NHS provision may tempt doctors to transfer more embryos than they should, with the resulting costly multiple births. The percentage of multiple pregnancies through IVF has dropped from 25% in 2008 to 11% in 2016, and this decrease needs to be sustained. Multiple pregnancies are three times as expensive as single ones, sometimes giving rise to emergencies in pregnancy, ill health conditions in the babies, and costs to families both psychological and financial. Regulation must resist the blandishments of doctors to maximise success through the transfer of multiple embryos.
There has been a rise in pre-implantation genetic diagnosis of embryos, enabling parents with a genetic disease to choose healthy embryos. It is possible to screen for about 400 serious diseases. There is no international legislation on this, leading to fears of designer babies. Egg freezing for social reasons and for the preservation of the fertility of cancer patients has increased to more than 1,000 per annum. The techniques for freezing eggs are improving and the topic needs to be revisited because the 2009 regulations on the statutory storage periods for gametes were drafted before freezing became a real option. Freezing enables women to start to balance personal and professional life choices. The basic 10-year limit on storage needs to be reviewed urgently. If a woman freezes her eggs at the age of, say, 25, they will be disposed of when she is 35 so they will not be available to her when she is most likely to want to use them—and even more so if she freezes them when she is in her 30s. If they are allowed to perish, she will be forced to use the more expensive and inconvenient donor eggs.
The regulations as they stand are discriminatory and may be contrary to Article 8 of the European Convention on Human Rights because sperm can be stored for 55 years. The 10-year limit on eggs is wasteful. The cost of treatment and annual storage charges are very high: a few thousand for the removal of the eggs and then a rising charge every year for storage—a charge which a woman has no choice but to meet, and in the end all that is wasted. An extension could be effected by regulation, as allowed by Section 14(5) of the Human Fertilisation and Embryology Act 1990, by adding a ground for extension such as the woman not yet having made a decision about use or not having completed her family. Alternatively, it could be achieved by a panel allowing extension on a case-by-case basis. I want an answer from the Minister on this.
Mitochondrial donation is another British first, which noble Lords will recall debating in this Chamber in 2015 when the regulations permitting it were approved. The UK was the first country to license gene editing in research and mitochondrial donation in treatment: that is, a second mother providing normal mitochondria for the egg of the carrying mother to free a baby of disease.
All these advances mean that the debates continue about the moral status of IVF and the embryo. We should be wary of too much pressure being put on women to pursue treatment at all costs and of treating men as mere sperm donors, along with the pursuit of perfection. Commodification of the male contribution is regrettably a consequence because the treatment and effects tend to be focused on women. The man’s consent was deemed necessary in the Natalie Evans case, but was totally overridden in the crowd-pleasing judgment in the Blood case, luckily undone by later legislation.
The burden of guilt on the shoulders of the infertile woman seems especially heavy in societies where wives are valued for not much more than their fertility. A message taken from reflection on the 40-year history of treatment is this: every woman, like every man, is worth while as her own person without having to be a mother. No childless woman should ever be made to feel that she can be perfected and given a role in life only by being subjected to every reproductive technique that can be provided at limitless expense. There has to come a time when a caring doctor should consider the infertile woman’s future with her if the treatment does not succeed.
IVF has responded to and been influenced by changes in family structure, providing egg donation and surrogacy for older parents and same-sex couples, and PGD and mitochondrial transfer to help parents avoid disease in their children. Anonymity in sperm donation has ended and children will be able to get information about their fathers if they know that they are IVF-conceived. This will have an impact on our views of biological and social parenthood.
What is coming down the line? Excess embryos have enabled human embryo research, for example into miscarriage and growth defects. They may be kept for only 14 days from fertilisation—a limit that requires re-examination now that embryos may be kept viable for longer. Researchers have reached a point where they are beginning to think about experimenting on embryos up to 28 days old. This is too controversial; it would reignite bitter divisions over the nature of the embryo. As chair of the HFEA, I have been asked when the embryo or foetus is viable; I am sure that many religious leaders have been asked the same question. In Judaism, the answer is quite simple: only when it has graduated from law school.
In any case, scientists are only just beginning to keep an embryo alive for 13 days. Despite the great medical advances that could come from watching the crucial period in human development in the first month after conception, the time is not yet ripe for extension, as was said by Baroness Warnock. The birth of a cloned sheep, Dolly, in 1997 led to studies on human embryonic stem cells and stem cell research. Cells may be used to grow tissue for regenerative medicine, such as for heart disease or Parkinson’s. Genome editing—the removal of heritable characteristics from embryos, eventually editing DNA—is progressing. It is not yet permitted here, but the Nuffield Council on Bioethics recently reported that it might be permitted on a case-by-case basis if it is consistent with welfare, social justice and solidarity, and strictly regulated. Should it be? These issues need to be debated by Parliament well in advance so that they are understood and acceptable to the public and can be placed under satisfactory regulation.
I am concerned that the regulation of future genetic advances is overly complicated and difficult to navigate. Will our genetic future be as well regulated as our recent reproductive past? Following the Rawlins review into medical research in 2011, the plan seems to be that the Human Tissue Authority licenses establishments that are involved in handling and processing tissue, and monitors the quality, safety and traceability of cells used for human application—except in the case of reproductive cells, which are the responsibility of the HFEA. The Health Research Authority provides ethics review and authorisation for gene therapy medicinal products. The HFEA has to decide whether to license novel treatments that involve the manipulation of reproductive cells according to its own criteria. The Medicines and Healthcare Products Regulatory Agency provides marketing authorisation for medicinal products, including stem cell therapies, under the advanced therapy medicinal products regulations. Is that clear? Me neither. This regulatory pathway is apparently clearer to navigate for stem cell researchers than it used to be, but consistency between EU member states remains an issue. Researchers may well go to the member state with the lowest safeguards.
In 40 years, IVF and reproductive medicine have gone from simple infertility issues to matters of convenience and preference, such as the insemination of older women who are past the menopause, posthumous insemination, choosing the baby’s sex, and PGD for the purposes of eliminating inherited diseases or achieving the birth of a sibling with tissue that may save a sick older child. Then, there is cloning and stem cell work that may give us renewed tissues and the ability to live healthily for longer, if not for ever.
Just as the invention of the contraceptive pill 50 years ago divided sex from pregnancy, so IVF developments have separated genetic parenthood from childbearing, the embryo and pregnancy. Baroness Warnock’s slim report succeeded in harnessing the very different views of scientists, clinicians, patients, ethicists, religious people and politicians. Developments in IVF have kept in step with changes in the modern family and have put Britain at the forefront of innovative but safe research. I hope that Baroness Warnock is proud of the achievements of the regulatory structure to which she gave birth. I beg to move.
Lord Mackay of Clashfern (Con)
My Lords, it is a great privilege to follow the noble Baroness, Lady Deech, on this important issue. I put my name down to speak simply because I had responsibilities in the early days of the development of the law relating to this subject. I join the noble Baroness in paying tribute to the then Secretary of State for setting up the Warnock committee, which did a tremendous job of dealing with an issue that had never really been dealt with before, either here or elsewhere. Its report was an excellent summary of the conditions required to be met by any legislation.
The issue of the report was followed by a considerable period of consultation. Eventually, shortly after I became Lord Chancellor, it was decided that we should legislate in this area. The drafting of such legislation, with no precedent of any sort but a very clear steer from the Warnock report, was quite a challenging task. In the meantime, a shadow body was set up, in effect to try out the structures proposed by Baroness Warnock and her committee. The lessons learned from that were certainly taken into account when framing the legislation.
In due course, the Government decided that the question of embryo research was one on which there was considerable difference of opinion and that, therefore, they were to take no line on it. They were to leave it to a free vote, which was influenced to a great extent by one’s views about creation and procreation on a theological level; some Members of the House were prepared to comment on that aspect of the matter and the nature of the research that was possible. As I said, a free vote was decided on. Of course, one difficulty is that there is no guarantee that the result of a free vote will produce a similar result in the two Houses of Parliament.
There was also the question of where the draft Bill should start. Ultimately, it was decided that it should start here. I therefore had the unique opportunity of bringing forward in Parliament something that was unique in the world. One of the techniques that we used, which I think proved extremely valuable, was to set out two choices in the Bill: one for embryo research and the other for where that was not permitted. The full detail was required on both and it was obvious that they could not subsist together. If I remember rightly, it was unique at that time to have such a combination in a statute. The question at the ultimate vote on the subject was: “A” or “B”.
The research scientists had instructed me that up to and until 14 days from conception, the materials in the cells in the embryo were not distinguishable between those which would go on to form the living embryo and the surrounding materials supporting that living embryo. Therefore, 14 days was, from the theological point of view, a good length of time to take where there was no identifiable human life yet obtaining. I think that is more the criterion that was used than anything about how long the embryo would last. It was the uniqueness of the personality question that was fundamental.
The spirit in which the Bill was considered here was one which I still remember with warmth. It was very clear that this was extremely important, very original, and needed very careful consideration. Needless to say, there were Members of this House who were in favour of embryo research and others who were dead against it. In due course, after very considerable debate at Second Reading and then in Committee, we had the vote on Report. I determined, rightly or wrongly, that no personal view of mine would be expressed. When the Government take the view that they should be neutral, it is very common for a Minister to have the chance to express his or her own personal point of view, even though the Government have not accepted it or are not ready to accept it. I thought that, from the point of view of securing a proper vote here, I should not express any personal view of my own.
There was a very full debate which was followed by the vote. It would be right to say that our late friend Lord Walton of Detchant was the leader, along with Lady Faithfull, of those who wanted to legalise the research. The other side was represented, at least to some extent; there were others—the late Duke of Norfolk was a pretty ardent opponent. However, in due course, the vote was taken and it was substantially in favour of that research. To my intense relief, when the Bill went to the House of Commons, the result was the same, so that aspect of the Bill went through with considerable success.
Then another development occurred. When the Bill reached the House of Commons, there was a question as to whether abortion was a proper subject to be considered in that Bill. Since it was all about embryos, it was quite hard to see how that debate on abortion could be excluded. So the very important debate on research in relation to embryos was equalised in importance by people who wanted to change the Bill that the noble Lord, Lord Steel, had introduced—it later became an Act—by modifying the terms of the exemptions. That was a subject on which it was pretty obvious that there was a very great deal of opportunity for difference of opinion. That having been added in in the Commons, and with the Bill coming back to the Lords, your Lordships can understand my anxiety as to whether we would get a Bill at all without relying entirely on the special authority of the House of Commons. Again, to my intense relief, the changes made to the abortion law in the Commons were accepted here very reasonably and so the Bill became the 1990 Act, and with it the appointment of the authority which has existed separately ever since, despite attempts to amalgamate it with others. It has been extremely successful and I pay tribute to those here who played a part, including the noble Baroness, Lady Deech.
The vast and rapid expansion of science led to a question: how long could the Bill, which was introduced and became an Act in 1990, last? I am rather gratified that the main structure of the Act in relation to the regulations and the regulatory powers has existed until now. There is very little sign of really radical change. There were substantial changes made in 2008 when the regulations required an order that IVF should be tried or changed, but the most important change was that the transformation of nuclear material was to be allowed. It is important in this connection to remember that the law here had been in favour of embryo research whereas, I think I am right in saying, most of the continental countries—our European partners—do not allow that or certainly have not allowed it. That was one of the reasons why, when the mitochondrial regulations were being discussed here, there was a bit of anxiety about confirmation with the European regulations. Fortunately for us, we were not party to all of these and it was, therefore, possible to introduce this tremendous possibility of dealing with mitochondrial diseases.
Over the years, this has been a tremendous area of success for our scientists and doctors who work in this area. I pay tribute to the noble Lord, Lord Winston—I am sorry he is not here today—who played a great part in this. I have heard his moving accounts of how women who were not finding it possible to have successful conceptions were dealt with and how important it was to do what was possible to alleviate that. I wish every success to this enterprise as it goes on into the future. I have great confidence that it will be successful as it is now.
Baroness Barker (LD)
My Lords, every day, my school bus used to go past a building which, in those days, looked very reminiscent of the Victorian workhouse that it had once been. It was a little general hospital that nobody paid much attention to, until that day in 1978 when Louise Brown was born—within kicking distance of Boundary Park—in that hospital. It is a source of ongoing pleasure to the people of Oldham that she was born not in New York, not in London and, best of all, not in Manchester. The story of why she came to be born in an obscure district general hospital and how the world-beating team came to be there is a very interesting story, which can be read in the books by the noble Lord, Lord Winston, and I suggest that noble Lords do so.
I thank the noble Baroness, Lady Deech, for the opportunity today to right a wrong. Everybody knows about Steptoe and Edwards; very few people, me included, knew about Jean Purdy, who was a central member of that team. She ran the lab, but she did a lot more than that. She was co-author with Robert Edwards of 26 academic publications between 1970 and 1985 and she has been credited with being the first person ever to recognise and describe the formation of an early human blastocyst. But, like many a woman in science, she has been overlooked and forgotten. Sadly, she is no longer with us—she died in 1985—but let us give her memory its rightful recognition today.
The noble and learned Lord, Lord Mackay of Clashfern, set out in helpful detail the history of legislation on this issue and the part played by this House, which it is important to recognise. Back in 1984, Baroness Warnock and her committee set out the ethical framework under which all subsequent consideration has taken place. In 1990, as the noble and learned Lord set out, the legislation came to the fore. It stands as a robust framework within which all the developments in science and societal changes have been assessed ever since.
It is on that note that I wish to proceed. Those who have followed my work in this House, particularly in a debate that we had in December 2016, will know that I have an ongoing interest in surrogacy, and I will talk principally about that today. This week has seen the #Scream4IVF campaign, led by the charity Fertility Network, which demands fair access to IVF fertility treatment. Be warned: it will be having a rally outside Parliament on 10 October, when it will be possible to witness the longest scream. I leave that to your Lordships’ imaginations.
Surrogacy UK and some of the other charities carried out some work throughout 2016. Principally, they went back to talk to Baroness Warnock about why she took the position on surrogacy that she did when the legislation was introduced. At that time, there was a very strong feeling, shared across the board, that we did not want commercial surrogacy ever to take hold in this country. On reflection, Baroness Warnock has said, we made the laws on surrogacy so tight that they have turned out over the longer term to be rather too restrictive.
Surrogacy was available prior to IVF, but the development of IVF opened the door to what is called gestational or host surrogacy. That made three significant changes: couples where both people could provide genetic material but where the woman was unable to carry a pregnancy to term could have a child who was biologically connected to both of them; if an embryo was created using a donor egg and the male partner’s sperm and the female could not carry, the traditional route of surrogacy could be avoided for those who wanted to use the help of a surrogate who was not biologically related; and others who had been unable to have children could now do so—that meant, for example, that gay male couples were now able to have children using surrogacy.
However, there have been some recent developments. In particular, back in 2017 a single person had a child by a surrogate abroad and brought that child back to live here in the United Kingdom. Under our present laws, a parental order could not be given for that child. As a result of that case, the Government found themselves forced to consider a change, and they issued a remedial order. The Joint Committee on Human Rights looked at the Government’s proposal and said that it thought that it set up other forms of discrimination against single people. That order was therefore withdrawn and a second one issued. That is the subject of a consultation that closes tomorrow. I sincerely hope that, when that consultation has finished, the Government will come forward, with some speed, with a new order that will allow single applicants with the genetic link to a child to apply for parental orders.
We had a fuller debate on the many issues of surrogacy back in 2016. At that time, the Government responded somewhat favourably. They have asked the Law Commission to carry out a review and to come forward with proposals for changes to the law. The Law Commission is doing its initial work. I met it over the summer and I think that the consultation will formally start in spring. I hope that when the Law Commission does its work and comes forward with a proposal, the Government will work with charities and the newly established All-Party Parliamentary Group on Surrogacy to come forward with legislative proposals, because there are people for whom time is running out. Their desperation shows in the letters they send to me.
I congratulate the Government on the guidance they produced in 2018 for those going through the surrogacy process—surrogates and intended parents—and the professionals involved in it. That was very supportive of surrogacy as a means of family creation. I reiterate the point made by the noble and learned Lord, Lord Mackay of Clashfern, when we had a debate on surrogacy. He said that there are now many more ways in which to have children and there are many more different forms of families than there were when this legislation was put in place. It is time to update it.
I will follow what the noble Baroness, Lady Deech, said about emerging developments in genome editing. This is exactly the kind of scientific breakthrough and research and development foreseen by those who set up the original legislation. As she said, there have been developments. In 2012, a new genome editing process called CRISPR was developed. It has had a dramatic impact by enabling much more precise and practicable biomedical analysis. In 2015, Chinese academics published the first ever research in which genomes of human embryos were edited using that means. As the noble Baroness, Lady Deech, said, this potentially has an impact not just for identification of potential disease but for improvements to fertility techniques, because it will become increasingly possible to determine which embryos are most likely to succeed in delivering a pregnancy.
The noble Baroness, Lady Deech, is right: at the moment, these are simply matters for research. No application has been made for this to be used in reproduction, but, as we know, we are not the only people in the world to be engaged in this work and there may be a breakthrough in another jurisdiction. If that were to be the case, I think that people in this country for whom infertility or mitochondrial disease are a significant factor would wish to see us do as we have done in the past, which is to take into account that which the scientists are saying and to arrive at a conclusion.
I agree with the noble Baroness, Lady Deech, that it is important to be clear about the regulation of research and treatment. We have led the way in this country, and we should continue to do so. The noble and learned Lord, Lord Mackay, talked about the protagonists on behalf of research—those who were pro research—and those who were against. I am all in favour of there being research, but only when a strong regulatory framework is in action and when there is quite detailed and regular parliamentary scrutiny of legislation and the performance of regulators. The heavier we are in legal requirements and regulatory supervision, the more likely we are to enable progress to happen much more rapidly. The way in which we have dealt with these matters over the years has been infinitely better than in the United States, for example.
I share with others the belief that the upholding of the original ethical principles set out for us by Baroness Warnock remains important, but it is for us as Parliament, working with the scientists as we have done so often in the past, to be sure that we are ready and able to determine how those principles should be applied to emerging scientific knowledge and new treatments and techniques. Why? Fundamentally, it is because of women. All these laws apply first and foremost for the protection of women, not only so that they can have the families that they want but so that they have safe places to go in which to fulfil their dreams and from which they should never find themselves being forced into either unregulated or unethical practice.
This is the sort of work that we do best. I thank the noble Baroness, Lady Deech, for reminding us of our responsibilities in this really important matter.
Baroness Boycott (CB)
My Lords, I thank my noble friend for bringing this anniversary to our attention and congratulate her on the incredibly valuable work that she has done. I was pleased, not surprised and slightly saddened to learn about another unknown, unsung heroic feminist scientist. I thank the noble Baroness, Lady Barker, for bringing her to my attention.
Forty-six years ago, I was a co-founder the feminist magazine Spare Rib. We were a great deal more worried about not getting pregnant at that point than about getting pregnant. We were right in the early years of the pill, the cap and the coil, and all the extraordinary things to do with contraception rather than conception. None of us had any children and we were woeful in dealing with the issue of how one might be a member of the women’s lib, as we were then, as well as being a mother. But I remember clearly some of my older friends who had worked and then tried to get pregnant in their 30s. For a particular friend to whom I was very close, it just failed and she hit her early 40s and had no children. We were only just six years before this quite extraordinary scientific development hit the world and, suddenly, the prospect of what it could mean for you as a woman to be able not only to have contraception but to be helped with conception when you needed it. It was a staggeringly wonderful invention.
It has done so many things for our lives and our times. As was mentioned by others, we have redefined to a great extent what it means to be a family: a family is about one or two loving adults of either sex bringing up a child that they greatly want. It has been babies born to same-sex partners and babies born to single women who have given up on ideas about how to find Mr Right. It is nothing short of a miracle and it is not an overestimation to say that it has changed not only the way we make babies but the family. A recent Cambridge University study showed that children raised by same-sex couples do just as well as those raised in heterosexual marriages. It is not a matter of the structure; it is a matter of the love.
However, I have concerns. Like many things in our world, access to IVF has all too often become the privilege of the rich, despite recommendations from NICE that all women who are over 30 and have been trying for two years or more to have a baby should be entitled to three cycles of IVF on the NHS. These decisions are made by local CCGs. As a result, only 12% of them currently offer those three cycles. IVF, like many things, has fallen victim to a postcode lottery. Can it be in any way true that your income should determine your right to be a parent?
We live in a society where we believe that everything we might desire will be available if only we can scratch up the money, but the promises that IVF clinics make to women are fulfilled in only 21% of cases. Forty years on from this extraordinary breakthrough, does it seem ethical that we allow clinics to trade on human desperation, turning what should be an altruistic medical invention into a gold-mine for the very few?
I know that we have strict laws around surrogacy in this country, but it also concerns me that very wealthy people can outsource gestation, increasingly these days to poor women overseas who will literally rent out their womb for a nine-month period. About 15 years ago, I had a television series and interviewed a very rich man. He was single, gay and, as Jane Austen would have said, in possession of a considerable fortune, but he was lacking something, and that something, he thought, was a child. I watched and filmed as he found an egg from a website in California—the donor was a six-foot tall Stanford graduate with long blond hair; he was a very small, dark-haired man. He got a womb from a different organisation, also online, and he flew over to Los Angeles for a week to deposit his sperm. Around nine months later, he was flying back to London with triplets. It was apparently quite tricky getting the passports, but they now reside somewhere in Hampshire.
His surrogate and the egg donor were extremely well paid; they were women who knew what they were doing and were apparently completely content with the arrangement. But it worries me: is it morally justified? Does it matter that a child’s biological origin is obscured by so many different routes, a bit like an offshore bank account? Only time will tell. These developments are happening faster than we can debate and consider them morally. Or does it again come back to money and being able to do what you want with it?
Women the world over are being sexually exploited and victimised through war, slavery and trafficking, and one of the consequences of this technology should never be an extra reason to exploit extremely vulnerable women who set themselves up to say, “I will rent my womb”. It is exactly the same as the illegal trade in kidneys—at least I think it is.
My final concern is what this has done for men. One of the things I think we got wrong in the early days of feminism was to say to blokes, “We want your jobs. We want to be in the boardroom, in the law courts, standing in front of university students, in politics, and what we would like you to have of our lot is the cooking, the ironing and the childcare”. It was not really a very intelligent trade. The end result is that roles for women have expanded enormously—we can be all those things—but I believe that it is still very difficult for men to be fathers, because as a society we do not put enough credit where that credit is due. It worries me that men, when it comes to IVF, are pretty much left out of the picture. They deposit their deposit and then they go on and hope for the best. I would hate to see this extraordinary science in some way devaluing fatherhood. Fatherhood is fantastically important to children and to men, and we should make sure in all this debate that we remember that it is just as important as motherhood.
The Earl of Selborne (Con)
My Lords, I join other speakers in thanking the noble Baroness, Lady Deech, for giving us this opportunity to review the progress of IVF over the last 40 years. Previous speakers have reminded us of the timeline of the developments, from Louise Brown’s birth in 1974 to the commissioning of the Warnock report, of which my noble and learned friend Lord Mackay reminded us, and of course the passage of the Human Fertilisation and Embryology Act, with my noble and learned friend again playing a central role. We then move on to the Human Fertilisation and Embryology (Research Purposes) Regulations 2001 and the more recent debates on mitochondrial donation. The most recent date in this timeline is when the regulator gave permission for the use of gene editing in research in 2016. It is to that subject that I want to devote my remarks today, looking forward rather than back to the timeline of the last 40 years.
The noble Baroness, Lady Deech, referred to the very informative Nuffield Council on Bioethics report, Genome Editing and Human Reproduction, which came out in July this year. This should be read in the context of its previous report of 2016, Genome Editing: an Ethical Review. We should be grateful to the council for these detailed reviews of the ethical issues arising from interventions which are becoming ever more feasible in a research context and for which, at some future date, legislation will be required, whether to enable or to restrict its application in clinical practice—if one were a betting man one would say it would have to do both, in fact. The debates we had in 2015 on mitochondrial donation demonstrated how important it is—however well-intentioned and desirable the objectives may be—for these new technologies, which allow precisely targeted alterations to DNA sequences, to be the subject of wide debate, both in Parliament and more widely in society as a whole, before any legislation is contemplated to allow the new technology to move into clinical practice.
Gene editing without doubt has the potential to reduce the prospect of a future child inheriting a genetic disorder. Of course, there are also potentials unrelated to the avoidance of medical diseases and disorders. These give rise to completely different ethical and value considerations. I repeat that in the United Kingdom, since 2016, genome editing has been approved for use in research but remains illegal for reproductive purposes. It is difficult at present to predict with any confidence whether the cases in which we might influence inherited characteristics by genome editing will one day be widespread or relatively rare. The Nuffield Council on Bioethics helpfully identifies three kinds of closely related concerns in anticipation of the arrival of prospective new technologies. Again, this is very familiar to your Lordships because we have had these debates on mitochondrial donation and other areas where new technologies change the potential.
The first concern is that we sleepwalk into a new order as a result of technological momentum arising from pursuing the aims of science without an adequate consideration of their broader social and moral context and implications. The second concern is over function creep, whereby a technology expands its repertoire to encompass closely associated purposes, often for reasons of economic efficiency. There can often be benefits, but there may also be underlying values that need to be properly considered. The third concern is that the introduction of a new technology will lead us on to a slippery slope: we may see dangers ahead but can find no plausible reason, once an initial, innocuous application is conceded, to resist this expansion into more controversial areas.
The Nuffield Council’s conclusion, as the noble Baroness, Lady Deech, reminded us, as to whether human genome editing would ever be ethically acceptable is that interventions of this kind to influence the characteristics of future generations could be ethically acceptable if, and only if, two principles are satisfied. The first is that such interventions are intended to secure, and are consistent with, the welfare of a child who may be born as a consequence. The second is that such interventions would uphold principles of social justice and should not provoke or exacerbate social division or marginalise or disadvantage groups in society. Of course, that encompasses a very wide concept and calls for a broad, inclusive societal debate concerning the desirability of such interventions. The debate we are having in this House on the 40th anniversary of the first baby born using IVF is an appropriate opportunity to draw attention to the need for genome editing’s role in the field of human reproduction to be the subject, in coming months and years, of just such a wide-ranging debate, not least in your Lordships’ House.
Lord Harries of Pentregarth (CB)
My Lords, I pay tribute to the noble Baroness, Lady Deech, for the opportunity to engage with this subject at a very timely moment. I pay tribute also to her role as chair of the Human Fertilisation and Embryology Authority. She was a very successful chair at a crucial time in the development of the authority. Perhaps it is also appropriate to pay tribute to the noble and learned Lord, Lord Mackay of Clashfern, who, as he indicated, played a very significant role in steering the legislation in the first place. I had the privilege of serving at a slightly later period as chair of the House of Lords Select Committee on Stem Cell Research, which allowed stem cells to be made from embryos.
I also had the privilege of serving as a member of the HFEA and as chair of its ethics committee from 2002 to 2009. It might help your Lordships if I try to give a feel of how the committee works. We have heard some very important points, particularly from the noble Earl, Lord Selborne, about legislation for the future. The HFEA, I think we all agree, provides a very good model for whatever might emerge in the future in relation to gene editing, so I shall give a little feel of how it actually works. It is, above all, a deeply serious and responsible organisation, as it ought to be, dealing as it does with human embryos. Its membership is made up of medical scientists, clinicians and representatives of other groups which have a major stake in this field—such as parents—as well as people with legal and ethical expertise.
The HFEA was set up by the will of Parliament and is controlled by law. Very great care is taken at every point to ensure that this is so, with a lawyer present at all key decision-making points. The guiding principle, enshrined in law, as we know, has been the 14-day rule, originally recommended by the Warnock report and accepted by Parliament. Research may take place on embryos only up to 14 days. This is a happy conjunction of law, science and ethics, for 14 days is about the time of the formation of the so-called primitive streak and the beginning of the nervous system, after which the embryo is individuated and not just a bunch of multiplying cells. This means that record-keeping needs to be and is meticulous: every single embryo has to be recorded and accounted for. As well as the regular inspection and licensing of clinics, a key element in the work is granting licences for ground-breaking research and for new forms of treatment. How this operates is that a horizon-scanning group, involving top medical scientists, surveys what is happening in research around the world and then makes a judgment of what might in the next years be of relevance to fertility treatment. It will then be sifted through the ethics committee before coming to the full board for a possible licence when an application has been made. The procedure is extremely thorough and serious and good time is given for it.
As a result of such procedures, pre-implantation genetic diagnosis has come to be used in connection with parents who are carriers of a hereditary condition. Initially, it was possible only for single-gene disorders such as cystic fibrosis but now it is possible to screen for about 400 serious diseases. A number of eggs are fertilised, then only one which is free from the disease is implanted in the womb. This is a truly wonderful advance—just one of a number—sparing thousands of children and parents years of suffering, heartbreak and early death. Another advance is in relation to mitochondrial disease, as we have already heard, a research licence for which was granted in my time on the HFEA. Since then treatment licences have been given, again sparing so much hurt, pain and suffering. In vitro fertilisation is not a comfortable procedure and its success rate is unfortunately not very high, so it is never undertaken lightly, but it has been a huge blessing now for so many. For some people, the inability to have a child is a great source of sorrow but 300,000 children and their parents can now be deeply grateful for the existence of IVF and for a parliamentary system which allows this to take place safely.
One source of disquiet at the moment, as the noble Baroness, Lady Boycott, has already mentioned, is the difference between different areas. The NICE guidelines are that everyone in need of IVF should be allowed three cycles on the NHS but some regions do not now follow this, for financial reasons. Private treatment is expensive and it is clearly inequitable that people in some regions are not able to receive what others can elsewhere. I believe all regions should adhere to the NICE guidelines. I do not believe that anyone has a right to a child—children are a gift—but they have a right to try for one, and should not be precluded from doing so by cost.
The HFEA has long been a regulatory model much envied by other countries and I fully support the proposals made that we should have something equally sound and long-tested in relation to genome editing. As we have already heard, this is progressing fast in the removal of heritable characteristics from embryos and, eventually, in editing the DNA. It is not yet permitted here but, as we have heard, the Nuffield Council on Bioethics has reported that it might be permitted on a case-by-case basis if it is consistent with welfare, social justice and solidarity—and strictly regulated. The noble Baroness, Lady Deech, indicated some of the overlapping confusion that there is in this area. Clearly, we need the most serious debate in this House about germline modification and how that is to be regulated. Parliament needs to set up procedures for considering this issue in depth, and to do so soon.
As well as celebrating today the fact that so many women have been able to give birth to children as a result of the HFEA and the legal system which allows for that possibility, we can also celebrate the fact that the HFEA has for so long been well tried and tested. It provides a wonderful model for whatever eventually comes by way of regulating genome editing.
Baroness Jolly (LD)
My Lords, I know it is customary when we begin to wind up to say, “This has been an excellent debate”, but this debate really has been. It has been excellent simply because we have all the expertise here among us—I certainly do not include myself in that at all. The tone was set by the contribution of the noble Baroness, Lady Deech, raising the outstanding issues of genetics regulation and new science. All this of course comes from her role as chair of the HFEA. She raised many more issues and it might be worth trying to tease some of them out, and perhaps have more detailed debates. We have all been painting with quite a broad brush today and some of the issues need a slightly more detailed camel-hair brush.
The noble and learned Lord, Lord Mackay of Clashfern, was there to ensure that the law was fit for purpose, and 300,000 children are really grateful that that happened. He spoke about the ground-breaking legislation but also the importance of his neutrality; I thought that was a really interesting history lesson. My noble friend Lady Barker spoke of surrogacy and reminded us all that families just do not look the same any more. The noble Baroness, Lady Boycott, painted—as a feminist—a lovely technicolour picture of offshore bank accounts, conception and contraception. I can remember being newly married as a young woman when all this was happening. It was quite amazing compared with what our mothers had had to go through; it seemed we could have choice every which way we looked.
I remember as well the sense of excitement and wonder at the arrival of Louise Brown, the world’s first test-tube baby. There were photographs of a beaming Steptoe and Edwards on the front pages, and clunky graphics by way of explanation. My noble friend Lady Barker and the noble Baroness, Lady Boycott, both mentioned Jean Purdy and I am going to talk about her too. The helpful Library briefing tells us that she was part of it at the first. A nurse by profession, Jean Purdy was the one who actually made what Steptoe and Edwards needed and wanted to do: she actually made it happen. She was not an add-on but absolutely part of the team, and seen by both of them as part of it. She was the one who saw the fertilised egg which was to become Louise Brown dividing to make cells. I cannot imagine how exciting that must have seemed at that time.
However, I do not recollect seeing Jean Purdy in any press coverage at the time. It appears, again, that she was wiped out of history by Oldham when a plaque was put up in 1982, and again by Bourn Hall—the centre which she, Steptoe and Edwards founded to deal with the huge call for IVF after Louise. To give credit where it was due, Edwards tried to remedy this and wrote letters to all the people concerned but he was not listened to. I sometimes get the feeling that some things never change.
There is absolutely no doubt that on the ethics of this birth, opinion was not restrained. Many, including religious leaders, wondered out loud whether we should be playing God. In response, the Government very sensibly appointed the eminently qualified academic Mary Warnock, later to become a Member of this House, to head up the Committee of Inquiry into Human Fertilisation and Embryology. Her report gave rise to the 1990 Act and its successors, which today still govern human fertility treatment and experimentation using human embryos. Its effect has been to require licensing for procedures such as in vitro fertilisation and to ban research using human embryos more than 14 days old. It has been really interesting to listen to the noble and learned Lord, Lord Mackay, explain where the 14 days came from, the need to balance faith and credibility and all the issues that were going on at the time.
Dame Suzi Leather—a name that I had forgotten about for a long time—former chair of the HFEA, noted that,
“perhaps the greatest achievement of the Warnock committee is that it managed to get an ethical consensus that people understood as well as shared”.
That is quite interesting. The report is worth a read—it is not hugely long—and if you look at who was sitting on her committee, you can see exactly what she meant. They included the usual: academics, medics and scientists, lawyers, the vice-president of the UK Immigrants Advisory Service, social workers, a theologian, the chair of a health authority, an expert in adoption and fostering and a former student counsellor of Cambridge University students. Evidence-givers were just as diverse. Again, they were the usual sort of suspects: churches and faith bodies, scientists, lawyers, health bodies, health practitioners, organisations dealing with fertility, gay rights organisations and, the one that really made me chuckle, Garter—the College of Arms gave evidence. I thought that was really interesting. Those of us who have been to talk to Garter will probably have a quiet smile at that thought.
Baroness Warnock said in her report, and in the letter that she wrote to the noble Lord, Lord Fowler, now the Lord Speaker:
“Despite the way in which members have worked together, there remain nonetheless certain differences between us; indeed, it would have been surprising if, on such sensitive issues, we had been united. These differences, presented in three formal expressions of dissent have, significantly, focused on the very subjects, surrogacy and research on human embryos, which, to judge from the evidence, arouse the greatest public anxiety. Thus even in our disagreement we have reflected the range of views within society. It is not possible that a report like this should be equally well received in all quarters, given some of the controversial issues we have had to consider. There is bound to be criticism that we have gone too far, or not far enough. However, we have sought to provide on the one hand a reasoned discussion of the issues which we hope will contribute to a high standard of public debate on matters which are of deep concern to the public, and on the other a coherent set of proposals for how public policy, rather than the individual conscience, should respond to a range of developments which many people will not wish to participate in, but which others find entirely acceptable. We have tried in short, to give due consideration both to public and to private morality”.
She writes well.
In 1985 the immediate response was to set up a licensing authority as an interim measure prior to the legislation, which was the Human Fertilisation and Embryology Act 1990. This happened when many of us were young and could readily identify with the importance and significance of these measures. Some 33 years later we have gene editing in research; mitochondrial donation; same-sex and unmarried couples treated just as married couples—as legal parents; the outlawing of sex selection; the removal of anonymity; and still more research continuing in hospitals, research establishments and universities. British scientists are nearly always at the cutting edge of this research. Here I agree with the points that were made by my noble friend Lady Barker and the noble Baroness, Lady Deech, about the critical importance of a strong regulatory framework and parliamentary scrutiny. However, the moral issues have not gone away. We dispute the difference between storing sperm for 55 years yet eggs for only 10. Is this an issue of equality or science? Then, there is the question of overdue legislation. Could the Minister tell us when and where this might be considered, and by whom?
Previous research has mainly focused on the economic issues that can affect assisted reproductive technology usage, such as a country’s wealth and health insurance costs. However, in 2017 scientists from the Oxford University department of sociology and Nuffield College assessed for the first time the relative importance of the role that economic, demographic and cultural normative factors play in the process. The study compares the prevalence of ART usage across 35 European countries since 2010—the number of ART cycles per million women of reproductive age, defined as 15 to 44 years. The findings reveal that although economic factors and national wealth are important, it is not merely affordability that determines ART use. ART treatments were more widely used in countries where it was considered culturally and morally acceptable to do so. For example, the Czech Republic, which ranks 51st in a poll of the world’s wealthiest countries, reported nearly 10,500 cycles per million women, a usage level almost identical to the comparatively wealthier Denmark. By contrast, high-income nations such as Italy and the UK reported only around 5,000 cycles per million, half the rate of the Czech Republic. I am not sure what that tells us, but it is interesting that it is not just about the ability to pay.
We cannot have this debate without discussing the availability of IVF on the NHS, an issue already raised by the noble Baroness, Lady Boycott, and the noble and right reverend Lord, Lord Harries of Pentregarth. The 211 CCGs in England should be offering three cycles to women who meet the criteria based on evidence. In 2013, 24% of CCGs met that recommendation; now, it is nearer 12%—halving in five years. That is one in eight CCGs. I know that choices are difficult for a commissioner, but the consequences can be heartbreaking for a couple wanting a family. CCGs in Bury, Heywood, Middleton and Rochdale, Oldham and Tameside and Glossop all offer three cycles, as per guidance. I like to think that Oldham is aware of its history in making that decision. CCGs in Cambridge, Croydon and Basildon do not offer IVF at all.
Are the local health and well-being boards involved? Could the Minister clarify what public engagement and consultation goes on when making those difficult commissioning decisions? What support or counselling is given to couples, many of whom may be grief stricken or distraught? Is IVF only possible for affluent couples? Is a baby something that all families should consider as a right and therefore available on the NHS? These are questions that, hitherto, we have been sufficiently wealthy as a nation not to need to answer, but we do now.
Perhaps, then, the 40th anniversary of Louise Brown, the first test-tube baby, should be an opportunity to consider these questions again.
Baroness Thornton (Lab)
My Lords, I agree with the noble Baroness, Lady Jolly, that this has been an excellent debate, and I thank the noble Baroness, Lady Deech, for bringing this celebration to the Floor of the House.
I was a small bit player in bringing the statutory instruments to this House when I was a health Minister and working with my noble friend Lord Darzi. Something dramatic happened during the Second Reading of the Human Fertilisation and Embryology Act 2008. One of our fellow Members had a heart attack in the Chamber, which delayed the passage of the Bill. I am pleased to say that he made a full recovery.
I have been reading that debate in Hansard, and it brought to mind some noble Lords who are no longer with us. Earl Ferrers had a lot to say about male inheritance and other matters. It reminded me that for a short time, I became an expert in what was known as admix—the noble and learned Lord, Lord Mackay of Clashfern, will recall those debates.
The point is that we debated them in good spirit with an enormous amount of authority and good will and, in the end, came to conclusions which not only protected and enhanced the rights of people to have children who had not been able to do so before but protected embryonic research for the benefit of the whole of our world.
That is why the UK has been a world leader in embryology and HIV treatment. That is why we have seen revolutionary successes over the years, which date back to July 1978: to Louise Brown, the first baby born by this method. Every person I told about this debate immediately knew her name—she is a balanced woman who has led a balanced and normal life. How different her life could have been had she not been the first person created in that way. I pay tribute to her for the life that she has led and the way that she has handled what could have been very difficult.
All of these breakthroughs have brought immense joy to families, but there are always improvements to be made. Many of those have been mentioned today. I pay tribute to the Human Fertilisation and Embryology Authority for the work that it has done under successive chairs, who have been distinguished and each brought tremendous work and talent to their role. I was one of those who fought for its continued existence when, in 2010, we had a Government who proposed a bonfire of the quangos. The Human Fertilisation and Embryology Authority was included as possible kindling for that bonfire. I am very glad to say that the Government of the day changed their mind.
I miss my noble friend Lord Winston from the debate, as I am sure everyone in the House does. In recent years, he has brought some useful commentary to your Lordships’ House about the issues that now need to be addressed, and has taken part in debates about mitochondrial donation techniques and gene editing, mentioned by the noble Earl, Lord Selborne.
I shall not take 15 minutes, because I think that most of the issues that needed to be raised in this debate have been raised eloquently by those who are very expert. The Government need now to address some of the issues and this is a good moment to raise them.
It is 10 years since the last major overhaul of the UK fertility and embryo law and it is time that we explore the scientific, medical and social developments that were not predicted when the current legislation was drafted, as well as the developments that are under way but have not been as anticipated. Egg freezing and its limit needs to be addressed. The noble Baroness, Lady Manzoor, was on the receiving end of a Question on this matter—in July, I think—when the noble Baroness, Lady Deech, raised it. I raise the issue again with the Minister: if the evidence is there that women’s eggs can be preserved for over 10 years without becoming damaged, it seems to me that there is no valid reason for this shortness of time. Otherwise, it can mean that women who have had cancer and recovered do not have enough time, because their eggs are not preserved. We know that this sort of dreadful thing happens.
It is also time that the Government look at the regulation of private clinics. We know that it can be very expensive for those who wish to go down that route. Private clinics can charge very much more than the average £3,000 to £5,000. There are records of patients paying over £20,000 for treatment, and these clinics can sometimes add on treatments that lack medical evidence as to whether they are really needed. My noble friend Lord Winston has raised this in the House and I am raising it again, as there needs to be a review of the regulation of private clinics. The Government also need to look at overprescription. The issues raised by women taking immunosuppressant drugs should be properly addressed. There was, again, a Question in the House not so long ago on whether the Government would review this issue.
Finally, there is also the issue of accessibility to IVF treatment. I should have declared an interest at the beginning: I am a lay member of a clinical commissioning group. The issue of the lack of availability of three cycles of IVF, in line with the NICE guidelines—or of any cycles at all—needs to be addressed. It is an example of a postcode lottery in the UK and it means that, if you live in the wrong place, either you have to be rich enough to afford IVF treatment at a clinic, as the noble Baroness, Lady Boycott, said, or the prospect of having a child disappears from your life with all the tragedy that that involves.
So, we say happy birthday to Louise Joy Brown and happy birthday to our embryology and IVF treatment system in the UK. It of course needs to be reviewed, but I think that the last 40 years shows that we are reaching middle age in pretty good shape.
The Parliamentary Under-Secretary of State, Department of Health and Social Care (Lord O'Shaughnessy) (Con)
My Lords, I join other noble Lords in congratulating the noble Baroness, Lady Deech, on securing this important debate. I join my Front-Bench colleagues in commending the quality of it; we are incredibly lucky both in this House and in this country to have such experts who are able to give such informed opinions on these topics. It seems to me entirely right that we should have the opportunity to acknowledge the ground-breaking work of Sir Robert Edwards, Dr Patrick Steptoe and, as the noble Baroness, Lady Barker, reminded us, Jean Purdy—who, it must be said, Bob Edwards always credited as the third IVF pioneer. It is right to acknowledge the development of the technique which has of course brought about the birth of around 8 million babies worldwide who would not have otherwise been born, as well as the signal role that the UK played as a world leader in providing not just the scientific technology but the right regulatory framework.
The noble Baroness, Lady Jolly, reminded us quite rightly that, even though IVF is so commonplace now, it is easy to forget the opposition that Edwards, Steptoe and Purdy faced when they were first doing their work. It is a credit to their determination and compassion that they were not deterred. It is true to say that they have transformed our understanding of human reproduction and what that means for how to have a family for ever. In doing so, they have brought happiness to millions—those who would not have been born and who are, presumably, happy to have been born, and their parents.
The noble Baronesses, Lady Barker and Lady Boycott, talked about the benefits for women of being able to make a choice about conception. I am grateful to the noble Baroness, Lady Boycott, for also talking about men and fathers. When my wife and I tried to start a family and were finding it difficult, it was something that we began to contemplate. We did not have to go down that route but at least we knew that it was there if it had been needed.
As the noble Baroness, Lady Barker, reminded us, it all started with the birthday girl, Louise Brown, born in Oldham in 1978. In a sense, it brought something that was out of science fiction into reality. A baby, conceived in a laboratory—in a test tube, to use the phrase—was then placed in the womb, leading to the birth of a healthy child. It had been unimaginable just a few years before. Not only did it open up the possibility of those kinds of births, but it also raised all the difficult questions with which we have been grappling since, to make sure that such a powerful scientific tool should not be open to misuse. That is why the Government of the day established the Committee of Inquiry into Human Fertilisation and Embryology—to make recommendations on the policies and safeguards that could be put in place to ensure that treatment services were provided in a safe and ethical manner and, as we have been reminded, to guide research using embryos. I shall return to this.
As has been discussed, the recommendations of the 1984 report formed the basis of the Human Fertilisation and Embryology Act 1990, the first legislation of its type in the world. I pay tribute to my noble and learned friend Lord Mackay of Clashfern, as other noble Lords have done, for the role he played in developing this excellent piece of legislation. I also pay tribute to the roles played by the Lord Speaker and by my noble friend Lady Bottomley. They remind us, as does the noble and right reverend Lord, Lord Harries, that it was a highly complex argument. It was happily debated in this House in the best of spirits and with the best of intentions. Difficult, challenging and, indeed, theological reasons were given for some of the policy decisions that ended up forming the 1990 Act. It is right that we recognise the role played by noble Lords and, of course, the work of Lady Warnock and the members of her committee. It is a testament to their sound judgment that so many of the principles they established still hold good. I also join the noble Baroness, Lady Thornton, in paying tribute to the HFEA for the rigour and leadership it has shown over the years and to acknowledge the leadership of the noble Baroness, Lady Deech, as well as the role of the noble and right reverend Lord, Lord Harries, in that institution.
Fertility treatment and IVF go to the heart of the deep desire—and, in some cases, psychological need—of people to have children of their own. As has been highlighted by noble Lords in this debate, we are faced today with questions different from those encountered by Edwards, Steptoe and Purdy, or even by the Warnock committee. I turn to these now.
The noble Baronesses, Lady Deech and Lady Thornton, talked about the 10-year statutory storage limit for non-medical egg freezing and their belief that it should be increased. They will be aware of the recent publication by the HFEA about egg freezing. It is important that we bring the latest available information to the public attention, so that we can have a better-informed debate as we go forward. The report suggests that women should be cautious in approaching egg freezing and keep in mind that current evidence shows that, overall, there is only a one in five chance of getting pregnant using frozen eggs. It is not an effective insurance policy for future family building, although sometimes it is absolutely necessary in order to build a family.
The noble Baronesses, Lady Deech and Lady Thornton, want to see that extension. I understand the reasons for it. There are exemptions for those who have lost their ability to be fertile for medical reasons. The question is whether and how there should be an extension to the 10-year limit for social use. My colleague the Minister for Mental Health and Inequalities has written to the noble Baroness, Lady Deech, in some detail as to why it would take primary legislation to make a change in the law. This is not least because, at the point at which they were passed, Parliament did not expect the regulations to be used to extend storage for social reasons. This is not a judgment on the benefits, merits or otherwise of the argument, but it is important to reflect that any extension to time limits for egg storage would be a significant social policy change, with far-reaching impacts on decisions that women make in starting families. It would require a broader public debate before any change could be contemplated. In some ways, this has been accelerated and amplified by our discussions today.
Several noble Lords mentioned the current postcode lottery in the provision of NHS-funded IVF treatment services, and I will deal with that head-on. We have been clear with CCGs that they need to take account of the NICE fertility guideline and to implement its recommendations in full, and I want to be clear that it is completely unacceptable where CCGs have stopped commissioning IVF altogether. My honourable friend the Minister for Mental Health and Inequalities will meet the HFEA and NHS England shortly to discuss how best to promote this guideline to NHS commissioners and support better-informed commissioning of fertility services, in particular to eradicate the non-provision of services such as these. I reassure the noble Baroness, Lady Jolly, that consultations are required by CCGs before any reduction of services such as this significant one.
Allied to this issue is one raised by the noble Baronesses, Lady Deech and Lady Thornton, about private treatment costs. It is quite right that the HFEA does not regulate cost, and IVF is indeed expensive. However, it is clear in the HFEA’s code of practice that before treatment, storage or both are offered, the clinic gives the patient a personalised and costed treatment plan detailing the main evidence of the proposed treatment, the cost of that treatment and any possible changes to the plan, together with those costs. In that way they have the opportunity to understand at the outset the costs that they are likely to incur and—to address a point mentioned by the noble Baroness, Lady Deech—that they have accurate information about the effectiveness of any treatments, particularly add-ons, that they are offered.
The noble Baronesses, Lady Barker and Lady Boycott, raised the important issue of surrogacy, and the impact on its availability by the 1990 Act; the noble Baroness, Lady Barker, reminded us of the particular impact it has had on single parents. I am pleased to say that we have been making progress in this area, and I am grateful to them for recognising that. A revised remedial order enabling a sole applicant to apply for a parental order was laid in Parliament before the Summer Recess. It addressed potential inequalities that were identified by the Joint Committee on Human Rights, which reviewed an earlier draft of the order, as the noble Baroness, Lady Barker, pointed out. The revised order also ensures that a single applicant who is biologically related to the child will always be able to apply for a parental order regardless of their own relationship status.
The Government are preparing the regulations needed to ensure that the changes made by the remedial order can work effectively. We hope to lay the regulations this autumn to enable debates in both Houses this year, and our aim is to ensure that new laws are in place by the end of 2018. Furthermore, we look forward to the results of the Law Commission’s review of the law surrounding surrogacy in general, and are working with all partners and stakeholders to improve the ability of people to pursue this route to parenthood if it is necessary and desired. However, in doing so it is necessary to recognise and address head-on some of the fraught ethical issues that we need to negotiate in doing so, as the noble Baroness, Lady Boycott, pointed out.
Many noble Lords brought the issue of research to our attention. It is right that the 1990 Act, which we are discussing, also covers embryo research. It is also right that we have fantastic new research opportunities offered by gene editing. Reference has been made to CRISPR/Cas9 and other gene-editing possibilities, which give us the opportunity to prevent serious inheritable diseases. What then does that mean at this stage for the 14-day rule on the use of embryos?
I am sure that noble Lords will be aware that the HFEA licensed the Francis Crick Institute to use this technique of gene editing in a research project in 2016. Therefore in that sense, although the 14-day limit is very much intact, the progress in research on gene editing of embryos below that time limit has started. We have also looked at the Nuffield Council on Bioethics report, which was referenced by the noble Earl, Lord Selborne, and other noble Lords, and we are giving these important issues careful consideration as we decide how to move ahead. There is great potential in these techniques, but these are early days, and the limits of the regulatory framework have not yet been reached. For that reason, there are no current plans to review the 14-day limit for embryo research. Indeed, I think I am right in saying that the noble Baroness, Lady Deech, did not herself feel there was support for such a change at this stage. I reference the important point made by the noble and right reverend Lord, Lord Harries, and the noble Earl, Lord Selborne: if we move ahead in considering these issues, we need both a broad and deep conversation about the right way forward.
Progress has been made on the issue of mitochondrial donation, as many noble Lords have pointed out. Parliament gave clear support for the introduction of regulations for mitochondrial donation to prevent the inheritability of serious mitochondrial disease. The HFEA is currently assessing these cases on a case-by-case basis, giving careful consideration as it does so. We believe this is the right way forward and it perhaps sets the template for how we ought to move ahead in future.
In the 40 years since Louise Brown’s birth, much has changed. Our knowledge of this unique area of science and medicine has developed and the success rates of IVF have improved. In that time it has become possible, as the noble and right reverend Lord, Lord Harries, said, to use the IVF technique to prevent children from being born with serious and sometimes life-ending medical conditions and to prevent the transmission of serious mitochondrial disorders from mother to child. It will be fascinating to see where the use of IVF goes in the next 40 years.
I think we all agree that the UK can take pride in the achievements of Edwards, Steptoe, Purdy and all those who have worked in both clinical and research settings. We continue to be world leaders in the field of assisted reproduction and embryology and owe huge credit to the staff of so many clinics, who have enhanced the lives of so many families. We can take equal pride in the fact that this country has enabled such ground-breaking techniques to be used in clinical practice, within a regulatory framework, administered by the internationally respected HFEA, to ensure safe, effective and ethical treatment for patients. This framework has been a blueprint for the world and will continue to be so. This House has an invaluable role to play in challenging and providing leadership and ideas for how we ought to move ahead.
Baroness Deech
My Lords, many years ago, before I was in this House, I was summoned to give evidence to a Select Committee of the Commons about the HFEA. I had hardly sat down when the chairman looked at me and said, “Who do you think you are, playing God?” I did not miss a beat. I said, “I am playing God because that power was given to me by Parliament”. I mean, who else could give me such a power? It goes to show how important, and how efficient, our law-making has been in this area, largely because of the expertise that was evident in this House then and is still evident today. This topic shows just how valuable the membership of the House is—it is full of ethicists, doctors, obstetricians and gynaecologists, theologians, and other people who know how these things work.
I thank the noble and learned Lord, Lord Mackay, for his contribution; I also thank the noble Baroness, Lady Thornton, the noble and right reverend Lord, Lord Harries, and many others who, over the years, have pushed forward the legislation or helped to improve it, or have served on the HFEA. When we have debates in the future, as we must do, about surrogacy and genome editing, I expect that same expertise to show itself. It is a very good example to the outside world of why we have a second House and why many of our Members are appointed on the grounds of their expertise.
Guiltily and belatedly, I pay tribute to Jean Purdy, to whom I should have given credit. There is a certain element, in science generally but also in this field, of rather overlooking the contribution of women. My experience when visiting clinics and seeing patients was that IVF was very much something that powerful and confident men did to grateful, subservient women. I heard one in vitro fertilisation doctor say, “I have made a thousand women pregnant”. I wondered quite what was going through his mind and how badly he took it when it did not work.
There is another unsung female hero, if that is the right word: Mrs Brown. We appreciate the birth of Louise Brown, but let us imagine and reflect on the courage and fear that must have gripped Mrs Brown as she waited to give birth to the first-ever IVF baby.
Baroness Barker
We have talked today about how Louise Brown was the first IVF baby, but we have not mentioned the most wonderful thing of all, which is that loads of people in Oldham, some of whom I know, were invited to take part in this world-leading research programme. They took part not because they had money but because they lived in a United Kingdom that had a National Health Service. So it is absolutely right to mention Mrs Brown, but a whole load of men and women in Oldham, whose names will never be known, played a really important part in all of this.
Baroness Deech
I am very glad to hear that intervention from the noble Baroness. I have often thought about Mrs Brown and it is very sobering to realise how many other people contributed to the eventual success.
I look forward to this House debating changes to surrogacy reform, which I hope will come soon. I hope also that we will debate genome editing and how to regulate it in the future with the expertise that we have.
There is just one issue that I remain unhappy with. I think that there must be a missing letter. The noble Lord, Lord O’Shaughnessy, referred to a letter to me from, I think, Maria Miller. I wrote to the noble Lord in mid-July but I have no recollection at all of receiving a response.
Lord O'Shaughnessy
I am sorry to interrupt the noble Baroness. It was from my colleague Jackie Doyle-Price, the Minister. If it has not arrived, I absolutely apologise, and I will make sure that it gets to the noble Baroness as soon as humanly possible.
Baroness Deech
I contacted the noble Lord this morning to say that I had not received a response. I can see that something went wrong somewhere and I do not quite know what the response will say. I listened to the noble Lord but I think that relying on medical exemptions to the 10-year limit is insufficient. Many—indeed, an increasing number—of the women who want egg freezing do so not for medical reasons but for pressing social reasons, with which we should have sympathy.
Regardless of the science, there is no reason why, if you can keep your eggs for 10 years, you should not be able to keep them for 20 if that is suitable—and it can be achieved simply by a change in regulation. The pressures on women with the biological clock ticking and the cost of freezing are such that it is a pity to say to them, “Don’t wait for Mr Right. Time is ticking. Mr Average will have to do, or Mr He-Will-Do will have to do”. As has been said, it would not involve many women—but the fact that there are not many is no excuse for not changing the law. So I hope that the letter, which I have not yet seen, is sympathetic. I will continue to raise in this Chamber the issue of egg freezing until we get a change, because it means a great deal to many women and it will have a profound psychological effect on the way they lead their lives.
I conclude by thanking all noble Lords who have participated in this very meaningful anniversary debate, and I am even more grateful to those who have played such an important part in achieving this great British success over the last 40 years.