Lord Winston
Main Page: Lord Winston (Labour - Life peer)(1 month, 3 weeks ago)
Lords Chamber
Lord Winston (Lab)
My Lords, I would like to come down to earth a little bit. First of all, I suggest that infertility is not a disease; it is actually a symptom of something wrong, and that is the basic problem here. What we are doing here with in vitro fertilisation is using a medical treatment for a symptom without actually making a diagnosis. That is almost universal; it is not only in this country but in every other country. In my view, that is something that neither the Human Fertilisation and Embryology Authority nor NICE have done. In fact, they have made it very difficult to investigate patients to find out what is wrong.
There are at least 100 causes of infertility, some of which are extremely serious and end up with people being childless. They could be treated far more cheaply in all sorts of ways but are not, because in vitro fertilisation is seen, as we have just heard, as the gold standard. Believe me, it is not the gold standard. Indeed, it is not well regulated, for reasons I will explain, and cannot be in this situation.
One issues we have to think about is whether we should really be doing some kind of special regulation for one small treatment in the whole medical spectrum. In my sense, that no longer works. The HFEA was an important body in its time, when there was public unrest about the human embryo and it was very clear that in vitro fertilisation was going to be a new treatment. It is now absolutely essential that IVF is normalised. That will be very complicated, but it is something that this Government could do; they could regulate it far more effectively with the vast things at their arm.
In vitro fertilisation is of course increasingly expensive, as the noble Baroness, Lady Deech, pointed out, because it is largely in private practice. It is in the National Health Service a bit, but the National Health Service is making a profit out of in vitro fertilisation. One president of the College of Obstetricians and Gynaecologists said to me, “Don’t say too much about NHS IVF: we need it because it is currently, together with abortion, paying for maternal care”. That was what he said privately as a president of the college. How we fund the health service is a real issue to think about.
At the moment, private clinics are making vast sums of money. Clinics are being sold for several hundred million pounds at a time; the equipment in them is probably worth about £15 million at best. There is very little understanding and regulation of that, nor is the inspections situation sufficient. In my own laboratory, I remember one year we had a fantastic review saying it was the best lab they had ever visited. We were not then treating patients; we were simply doing research, with some patients being involved in that research. The following year, having changed nothing that was praised, we got a terrible review—for no reason other than the fact there was a different set of examiners, some of whom were in private practice and were jealous of what we were doing. That is a real issue.
That resulted in my closest colleague, Kate Hardy, who was one of the best embryologists in Europe, finally saying she did not want to do embryo research any more—she was in tears—and she never did. She was actually so depressed by that review that she gave up and ended up doing other work on the ovary, which did not involve in vitro fertilisation. We lost one of the best scientists we could have had in that field. She had papers in Nature and many other journals. We had worked together, for example, as the first people to do pre-implantation diagnosis, to look at genes in the embryo, and she was one of the four authors of that paper. She gave it up because of what the HFEA had done to her mentally. She really suffered.
I want to make it clear that we need to do something much more serious about this. As much as I respect the noble Baroness, Lady Deech, we cannot say that it is the envy of the world: it is not. As a so-called expert in in vitro fertilisation—whatever that means—I have visited virtually every civilised country where in vitro fertilisation is done. They laugh at the idea of the HFEA. It does not matter where you are: they do not think that our regulations are fit for purpose.
One of the issues is the way we understand the results of in vitro fertilisation. I mentioned this in the King’s Speech debate the other day, when I pointed out that one area of in vitro fertilisation that is hopelessly accounted for is egg freezing. I showed the data: there are something like a quarter of a million eggs recorded as available which have been frozen. So far, some 34,000 of those have been unfrozen in the past year for the purposes of treatment. Of that number, 2,000 embryos were produced, and only 900 pregnancies were produced. We do not even know the number of live births. People do not want to have an embryo transfer; they want to have a baby. That is why they come.
The problem is that, right from the beginning, we ignore the fact that the treatment is a long process. It starts with an assessment of what is wrong, which should mean a diagnosis, wherever possible. Secondly, we have to look at the hormonal control of ovulation. Particularly, we have to understand that the eggs must be matured properly before they can be treated with sperm, otherwise you do not get normal embryos. When that is done, we have the problem, in some cases, of finally getting embryos. But before we do that, we have to understand male infertility, which is very poorly served and really not dealt with at all by the HFEA, even though it is an integral part of infertility. We need to have far more expertise in dealing with male fertility. We have just ignored it completely, quite unnecessarily. All sorts of research could be employed—but we do need more research.
Once we have an egg that seems to be fertilised, we culture it. It spends up to five days in a dark medium, the constituents of which we do not know, because the constituents of the media that are available commercially are secret. We have been doing extensive work on this to find out what the ingredients are. One of my colleagues, Sheba Jarvis, has looked with spectroscopy and we found 302 different proteins which we did not know were in one particular medium. That is really quite serious, because some of these proteins may be bioactive and could have an effect on the outcome of the culture. After that black box is opened and the embryo is taken out, if it has produced an embryo—which it does in some cases—we hopefully end up with an implantation.
All those stages carry a failure rate, which is not recorded properly in the statistics. In fact, when I recently asked the HFEA to write to the Minister, I was told that we do not know how many eggs are being frozen, how many end up fertilised, how many become embryos or what happens to those embryos—we only know the number of embryos transferred to uteruses and the number of pregnancies. We do not even really know the number of miscarriages, which seems to be at about 15%. That is not satisfactory.
In conclusion, I would argue that the HFEA was a great organisation to start with, but it is now no longer fit for purpose. We need to bring it back in to make in vitro fertilisation a proper treatment that is recognised, so that it ceases to be something that is managed by private practitioners at huge advantage to their pockets. That should not be allowed to happen.
My Lords, I am very pleased to respond to this debate, particularly regarding the adequacy of law on the regulation of fertility treatment. I thank the noble Baroness, Lady Deech, for raising this topical and important matter and for her thoughtful and wide-reaching comments which framed the debate that followed.
As always, I have to start with the caveat that I probably will not be able to answer everything that has been raised today in the time that I have, but I am always happy to write to noble Lords to expand on their very thoughtful points around this complex issue. Just to reframe it, I remind everyone that the UK’s Human Fertilisation and Embryology Act came in 1990, and we all need to reflect on just how long ago that is. The Act set out to regulate assisted reproduction and human embryo research. It established the Human Fertilisation and Embryology Authority, as we have heard from the noble Baroness, Lady Deech, and I shall refer to that as the HFEA. This was the first dedicated regulator of fertility treatment and embryo research anywhere in the world. It is quite extraordinary that it still has so many robust features that are applied to this day.
The HFEA ensures that fertility clinics operate to high standards and that sensitive and complex treatments are carried out safely and ethically. It remains an important and effective regulator, helping to ensure that treatment and research are conducted responsibly, with positive outcomes for patients. This is particularly important as fertility treatments continue to help people in the UK to have children—we must not forget this—with almost 21,000 babies born from IVF in 2023, accounting for one in 32 UK births. Having treatment in a UK-licensed fertility clinic continues to be very safe. In 2024-25, out of more than 100,000 cycles of fertility treatment, storage or donations, incidents occurred in less than 1% of cycles.
The issue of postcode lottery was raised by many noble Lords today, including the noble Baronesses, Lady Deech, Lady Pidgeon and Lady Gerada, and the noble Earl, Lord Effingham. The National Institute for Health and Care Excellence guidelines for fertility problems, assessment and treatment were published on 31 March 2026, and this guidance informs how ICBs should commission fertility services within their local populations. However, the Government recognise that access to NHS-funded fertility services is variable in England and are looking into achievable ambitions to improve access to fertility services. With regard to ICBs, the nature of commissioning that we have in England is a really important element of this.
However, the Government recognise that the success of the legislative framework does not mean that it is fully adequate for the modern day, which has framed so many comments today. The fertility sector has evolved significantly since 1990, when the first Act was introduced—the noble Baroness, Lady Deech, was quite right to highlight the challenging issues—and, although it was updated in 2008, that is still a significant amount of time away. Scientific advancements, changes in societal attitudes and the growth of a largely privately funded treatment sector have transformed both demand and delivery for such a service. The HFEA itself has concluded that while much of the original framework remains fit for purpose, targeted reform is now required.
In 2023, the HFEA published the detailed set of recommendations to update the original Act, identifying four key areas in which reform is required, including patient protection and safety, as we have heard so clearly today, consent, donor anonymity and scientific developments. Within this, the HFEA set out its views to strengthen regulatory powers to protect patients, simplify consent, and ensure that the system can accommodate scientific innovation, as so clearly raised by the noble Baroness, Lady Owen, and the noble Earl, Lord Effingham. These issues do not undermine the foundations of the existing system; rather, they highlight an opportunity to update and future-proof the framework.
The HFEA has highlighted the need for the regulatory framework to reflect changes in how patients access information and treatment decisions. Since 1990, the growth of online platforms and social media has fundamentally reshaped the fertility landscape, influencing how patients engage with clinics, access information, and make decisions about treatment.
In terms of the very thoughtful contributions around surrogacy, I should add that the Government recognise the significance and importance of this issue and welcome the Law Commission’s comprehensive report, published in 2023. However, given the limited parliamentary time available and competing legislative priorities, we are not currently able to bring forward the reform immediately, but we will publish a formal response as soon as capacity allows and keep this issue under review.
To the point made by the noble Lord, Lord Palmer, on setting financial penalties, I say this would also need to be considered as a part of the broader update in regulatory powers. The other absolutely critical area covered by so many noble Lords, including the noble Baronesses, Lady Gerada and Lady Deech, the right reverend Prelate the Bishop of Chelmsford, and the noble Lord, Lord Winston, is the whole issue of consent. The Government recognise concerns raised by noble Lords on the complexity of consent arrangements, including withdrawal of consent and ensuring patients fully understand the legal implications, and we will consider all these issues as part of any wider reform.
I am very grateful to my noble friend Lady Nargund for her informed contribution to this debate. She is right to highlight the success and the continuing importance of the regulatory framework. That framework, together with the work of the HFEA, has delivered tangible improvements in patient outcomes, including significant reductions in multiple birth rates and greater transparency through the publication of clinic performance data.
The Government are clear that patients must be at the centre of the system. Fertility treatment can be physically and emotionally demanding, and we expect providers to meet the highest standards of care, safety, and ethical practice. We recognise the argument that the legislation should more explicitly reflect the safety and protection of those undergoing treatment. This has been carefully considered as part of the wider discussions on potential reform.
We acknowledge concerns about the limits of the current enforcement regime to drive improvement and that better use of data has the potential to strengthen oversight and support joined-up care. I assure the House that all these issues are receiving careful and ongoing consideration. Any reforms must strike the right balance in maintaining public trust and patient safety while enabling responsible scientific progress.
I again emphasise the fact, which I know will be disappointing to noble Lords, that the legislative programme for this parliamentary Session is very full. Due to the limited time available to undertake legislative reform and the priorities the Government set out in the King’ Speech, we are not able to pursue immediate legislative reform of the Act in the current Session. However, the Government are considering potential legislative options and, if parliamentary time allows, will ensure that any future reforms support patient safety, reflect societal change and maintain the UK’s position as a global leader in fertility regulation. I can tell that the noble Baroness, Lady Owen, is perhaps not as impressed as she might be, but I am sure she was expecting my comments none the less.
On the possibility of setting up a Select Committee, which was raised by the noble Baroness, Lady Deech, we will of course consider all the different options. As she outlined, one of those options could indeed be setting up a relevant committee.
I recognise the need to update the Act. On the significant changes in fertility and scientific innovation we have witnessed and the comments by the right reverend Prelate the Bishop of Chelmsford, I am sure she will appreciate that any reform must be approached in a considered and balanced way, given the ethical sensitivity and complexity of this area.
On the issues raised about the lack of clarity on the fate of embryos for those families who very sadly could not continue treatments, any future reform would include a review of issues relating to digital clinics and how we might move forward to improve the regulatory regime in the digital area.
On the inequity and commercial exploitation in the fertility sector, raised by my noble friend Lord Winston, it is right to highlight the pace of change in the sector. While we acknowledge that the legal framework has provided strong safeguards and recognise the growing pressures from the expanding and increasingly complex private market, the Government are clear that patient safety and fairness must remain paramount and support the HFEA in maintaining the robust regulation of clinics. However, we also recognise concerns about affordability, access and the risk of inequity. While the UK continues to have a strong, established regulatory regime, we are not complacent and will continue to determine next steps to ensure that it reflects developments in both technology and the market.
Going back to the framework, the task before us is to build on the framework to retain the strengths of the existing legislation while reinforcing the capability of the HFEA and ensuring that the law keeps pace with science, society and patient expectations. We look to ensure that the UK continues to lead in the responsible regulation of fertility treatment.
My noble friend Lord Winston raised important issues about egg freezing. As we are aware, elective egg freezing is not a service provided by the National Health Service. The HFEA publishes advice about egg freezing on its website, including information about the process, risks, success and data on this. Those who freeze their eggs do so within a tightly regulated system with strict rules set out in law and in the HFEA code of practice. The HFEA expects clinics to follow consumer law and advertising guidance for UK fertility clinics produced by the CMA and the ASA. Although egg freezing is becoming a popular choice, it is not, as we have heard very clearly today, an insurance policy that can guarantee a baby in the future. Fertility clinics have a responsibility to ensure that anyone using fertility services understands the risks and the long-term impact of any treatment decisions that they make.
I am pleased to say that my noble friend Lady Merron listened very carefully to the issues raised by my noble friend Lord Winston during the King’s Speech. Although she was not winding up on that particular debate, she undertook to write to him, sparing the noble Lord, Lord Hendy, from attempting to answer his questions in the summing up. I am pleased to say that she has since written to him to address his concerns and will, Iusb have no doubt, engage with him on the further concerns that he has raised.
The noble Baroness, Lady Owen, raised particular concerns about Apricity. I think all of us will have heard about those cases with extreme concern and felt sensitivity for those people who went through such a distressing experience. Of course, we know that Apricity’s closure did not fall under the HFEA’s regulatory remit, as it was a digital service only. Of course, affected patients were advised to complain through trading standards about the service that was offered. Cases such as this will be very much at the forefront in considering the work we need to do going forward.
I have on several occasions listened with enormous interest to the noble Baroness, Lady Boycott, about the impact of chemicals in our system. I do not have the ability to respond to her fully on that point, but it is an issue—also raised by my noble friend Lord Winston—that is generating a huge amount of concern. I reassure her that I will write to Defra colleagues and ask them to pass on their comments. We will send a copy of the words she said today to move that on.
I do not think I have debated with the noble Baroness, Lady Shawcross-Wolfson, before. I was very interested to hear her comments, obviously based on a lot of experience at the policy end of the spectrum. I look forward to her further contributions on this point.
I again thank everyone for taking part in this important debate. The challenges are very well recognised, and we look forward to addressing them in a way that many couples, families and individuals can benefit from in the future.
Lord Winston (Lab)
Before the Minister sits down, I wonder whether she would be kind enough to answer one question for me. The figures that I presented on embryo freezing show that there were 909 births, some of which miscarried. However, it is clear that at least 42,000 treatments with embryos were given to different women in that period of time. That is a massive disappointment for women who are hoping to preserve their fertility. Even that figure is clearly an underestimate. I repeat my question to my noble friend Lady Merron and request that she be kind enough to write to me explaining why the HFEA no longer keeps these figures in the way it used to. It is really important to find out what is happening.
I am delighted to say that I will pass on my noble friend’s comments to the noble Baroness, Lady Merron. As I said, she will follow up on further comments that he has made today. I was struck by the statistics that I looked at and that my noble friend has raised in the debate today. In this day and age, we should make sure that we have up-to-date data to analyse. We have the tools to do it, and we should make sure that everyone involved makes full use of that opportunity.