Human Fertilisation and Embryology (Amendment) Regulations 2024

Lord Winston Excerpts

Tuesday 22nd October 2024 Grand Committee

[Lord Wigley (PC)]

My Lords, I am delighted to contribute briefly to this short debate for one specific reason. Back in 1990, when the defining Act was passed, it was at the end of a strenuous five-year battle of attrition, as certain Members in this Committee—in particular, the noble Lord, Lord Winston—will recall. The right honourable Enoch Powell had tried in 1985 to get a Private Member’s Bill, the Unborn Children (Protection) Bill, on to the statute book. It was hugely controversial; if passed, it would have prevented essential research into both infertility and avoiding certain hereditary disabilities, such as cystic fibrosis and muscular dystrophy. I should declare my own interests: we then had two boys who were alive with hereditary conditions.

This led to the establishment of the organisation Progress. Three of us were trustees: the late Jo Richardson, Peter Thurnham and myself. We were immensely indebted to advice and guidance from the medical fraternity, in particular the noble Lord, Lord Winston, people such as Robert Edwards and Michael Laurence, and a number of others. When that Bill was originally put forward by Enoch Powell in February 1985, it was passed in the House of Commons by 238 to 66 votes. By 1990, five years later, there had been such a sea-change in public perception—thanks to much of the work undertaken by the noble Lord, Lord Winston, and his colleagues—that the House of Lords passed what became the 1990 Act by 238 to 80 votes and, at Second Reading in the House of Commons, it was passed by 362 to 189 votes. It was an immense change in the public mood.

I pay tribute to the noble Lord, Lord Winston, and his colleagues for their pioneering work. I also pay tribute to those who have done such great work over the past 35 years at Progress and its successor organisation, PET, which is an independent charity that improves choices for people affected by infertility and genetic conditions.

On these specific regulations, I wish to ask the Minister a couple of questions. First, can she confirm that the devolved regimes—in particular, Senedd Cymru —are fully in support? Although this is not a devolved matter, it obviously overlaps with responsibilities that are devolved. Secondly, can the Minister give some indication of the potential additional costs on clients, to which reference is made in paragraph 9.2 of the Explanatory Memorandum? Might these be punitive, or even prohibitive? Thirdly, is there any likelihood of costs escalating to over £10 million? If so, what would be the mechanism for a statutory review, as mentioned in the regulations?

I welcome this instrument but I would be grateful for answers to those specific questions.

[Lord Winston (Lab)]

My Lords, I am rather embarrassed after the noble Lord, Lord Wigley, has spoken so volubly and over-kindly about the work we did together. I have to say that when he was Dafydd Wigley MP his amazing attempts to help us subvert Enoch Powell’s Unborn Children (Protection) Bill meant sitting all night several nights running to prevent that legislation going through, even though there was a big majority in the House of Commons. It is a remarkable story that has never really properly been told, but perhaps it should not be told. I cannot divert the Committee now, but one of the extraordinary things was that by the end of that I had remarkable respect for Enoch Powell, which I never expected. He behaved in an extraordinary way and with great dignity, even when he was losing. He was not quite as prejudiced as people made out. I think he was intellectually challenged by what he was seeing in front of him.

I return to the amendment, the business in hand today, which is essentially the issue with HIV-positive patients. We were the first people in the world to treat people who were HIV positive back in the 1980s. We had a baby as early as about 1986, possibly 1985—I cannot remember. It was a long time ago. That was before the regulations. We were aware that there was a small risk of transmission, but with caesarean section and so on the risk was so minuscule that we felt it was worthwhile. It got a lot of adverse publicity, until it was copied by a lot of other people, and it went on to be accepted. However, I accept completely that what the Minister is recommending is safer, but there are just a few questions I would like to ask her.

First, what would happen if the recipient was already HIV positive? Is there some regulation? That was something we faced nearly 40 years ago. I should like her to explain because I am sure things have moved on with the legislation, and I am not now clinically in practice, although I am still active in research. Secondly, I am concerned that the Minister should argue that this is just a matter for private practice. That is not acceptable. This should be available under the health service. The fact that somebody has a problem with HIV should in no way discriminate against their getting or giving proper treatment to a friend, relative or other person. I regard that as an essential human right. I suspect that there might be some reason to question that.

Unfortunately, one of the terrible things that has happened in Britain is that at the moment human in vitro fertilisation has become colossally expensive. The Minister gave a figure of £1,000. I regret to say that in London that would be almost impossible. I suspect that most people getting donations of this kind would be spending far more than that, even though it may not be clear. Clinics do not declare what they charge. The Human Fertilisation and Embryology Authority claims that it has no power to deal with the price of IVF. That is important to consider. I hope that the Minister will at least address that issue because undoubtedly—I beg her for obvious reasons because she will have sympathy—there is massive exploitation of women going through in vitro fertilisation. Every week, I get stories by email that suggest that what is happening not other than somewhat under the table, so that is the other issue.

The Minister made no mention of counselling. When the Bill was initiated back in 1990—it was passed first in the House of Lords, of course—there was a clear discussion during that debate about the need for counselling. It was repeated in the House of Commons as well—I see the noble Lord, Lord Wigley, nodding—and it was written into the workings of the Human Fertilisation and Embryology Authority. It is therefore important that proper counselling is part of this, and it should be written in in some way so that there is some understanding that it should be there.

The issues with HIV are always of concern, certainly in IVF. Suppose that somebody who was negative suddenly becomes positive again, which is not impossible, even though they may have had retroviral treatment in between. We ought to be aware of those things with this instrument.

Having spoken at great length on what seems quite a trivial matter, I have probably wasted the Committee’s time a bit. I am completely in agreement with the aim of what is undertaken here. I do not think there is any need to change the wording or anything like that, but what I am talking about must be considered. I thank the Minister, and I thank the noble Lord, Lord Wigley, for his extraordinary work 40 years ago, which is still remembered and greatly appreciated.

[Lord Scriven (LD)]

My Lords, in following the noble Lord, Lord Winston, I disagree with him: he never wastes the Committee’s time with his knowledge and expertise in helping this field move forward. After listening to the noble Lords, Lord Wigley and Lord Winston, I think that this statutory instrument is not just a one-off regulatory update; it represents a continuation of the journey in the realm of reproductive rights, scientific progress and ethical standards in this part of healthcare. It is important that both noble Lords asked us to look at these amendments in the context of that journey.

The landscape of reproductive rights technology has evolved dramatically—particularly recently—with advancements in IVF, genetic screening and other reproductive technologies. We have the potential to transform countless lives in this field. I note that the noble Lords, Lord Winston and Lord Wigley, say that some people are perhaps debarred because of the lack of provision on the NHS. In a wider debate in a wider context, I am sure the Minister would want to take up the discussion and debate that when we have the time.

However, we must note that progress comes with challenges, especially regarding ethical considerations and access to these technologies. These amendments seek to address some of those concerns so that couples made up of two women and those living with HIV have a better chance, or a more equal chance, of accessing this kind of healthcare and technology. These regulations are a step forward in this area in health provision and help to promote equity so that more people can pursue their dreams of parenthood, notwithstanding the issue of where they get that provision, whether in the private sector or the NHS.

As the Minister said, it is essential that these regulations highlight the importance of supporting diverse family structures in 2024. These amendments recognise that families come in various forms and that reproductive technologies should be accessible to all families on an equal basis.

Over the past couple of days, I discussed what was coming before the House with friends, and some people raised concerns, interestingly, about the implications of the use of gametes from people living with HIV. Therefore, it is crucial to understand that the amendment does not advocate unrestricted access without proper oversight. It promotes a balanced approach that prioritises ethical standards while facilitating innovations in HIV medicine. Advancements in HIV treatment have not only significantly improved health outcomes for individuals living with HIV but have made it safe to include people living with HIV more broadly in these amendments.

These regulations champion access, ethical standards and innovation in reproductive health. Notwithstanding the questions asked by the noble Lords, I have no questions because we support this SI. We believe it not only empowers individuals and families but fosters a reproductive healthcare service that values inclusivity, diversity and ethical progress.

NHS Hospitals: Apheresis

Lord Winston Excerpts

Wednesday 9th October 2024 Lords Chamber

[Baroness Merron (Lab)]

What the noble Baroness says is very true and I certainly can give the assurances she seeks.

[Lord Winston (Lab)]

My Lords, I have scanned the literature because I looked at this Question on the Order Paper, and I noticed that there seem to be very few completed trials showing clear efficacy of stem cell transplantation, except in the case of blood dyscrasias such as cystic fibrosis. Would the Minister be kind enough to let me know how many trials are being conducted in this country? If she does not know, maybe she could tell me in due course.

[Baroness Merron (Lab)]

I thank my noble friend for raising that important point. I will be very pleased to look into this further, so I can answer him in full.

Covid-19 Inquiry

Lord Winston Excerpts

Tuesday 3rd September 2024 Lords Chamber

[Lord Winston (Lab)]

My Lords, in 1917, at the height of the terrors of the First World War, Hilaire Belloc wrote to GK Chesterton and said, “Sometimes it’s necessary to lie damnably in the interests of the nation”. And 103 years later we had another, much smaller catastrophe: the pandemic that we are talking about now. It was not quite global but it came close—and it was certainly very serious. Something that we have not discussed very much about this report is the question of the believability of what we were hearing about the pandemic, and that is a more serious question to be answered.

I must say that it was a pleasure to work behind my noble friend Lady Thornton, who again and again, absolutely selflessly, led the way in the debates. What was encouraging to both of us—certainly to me; I must say that I have not discussed this with her—were the repeated answers of the noble Lord, Lord Bethell, for the Government, who, I think, tried to speak honestly and directly every time. He even answered emails almost immediately. He was sometimes somewhat indiscreet; I am not going to say exactly what his emails said—that is between him and me—but he certainly was one of the really good people in this. But, on the whole, not all the Government, in many people’s minds, come out quite so well.

It is also reassuring to consider that it was wonderful to see both Chris Whitty and Patrick Vallance—now the noble Lord, Lord Vallance—supporting the Government, but how difficult it was for them to be, with the Prime Minister in the centre, in a kind of showcase. This is very difficult for scientists who have to do their best to tell complete truth wherever they can and to be as objective as they can when, in fact, there are political considerations through no fault of any of them. Anyhow, one of the issues is that, since the pandemic, the reputation of politics has not yet got back to where it should be—that is rather important.

I want to discuss two issues. One has just been touched on by the noble Baroness, Lady Coussins: the question of track and trace. That is a very good example. At one stage, I remember, at a committee meeting, inquiring rather rudely of the noble Baroness, Lady Harding, who was then invited to lead track and trace, “Why is it that people don’t trust you?” She looked a bit amazed that anybody could ask her that question and her advisers and officials did not help. About 10 days later, I got a message asking whether I would respond to a phone call. It had to be done by the hour, so, at a certain time, she phoned me and said, “Is it really true that people don’t trust me?” I said, “Well, do you think that people are trusting track and trace? They’re not”. “Why not?” I said, “Well, being tracked and traced is an invasion of your privacy, for one thing; it gives you the risk that you might find out something that you don’t want to hear; it gives you the risk that you might not have wanted to be in the place that you were tracked from, and so on”. She said, “Well, what should we have done?” I said, “Well, it’s pretty obvious, isn’t it? One way of changing public opinion is by demonstrating that it would be good for the person concerned. So you say, ‘If you’re traced and diagnosed, you’ll get much quicker treatment before any serious consequences of the disease are present’”. “Oh”, she said, “I must run and tell the Prime Minister”.

That was not a brilliant example, but it is interesting because, thinking about it, the other issue I am tangling with is the reverse: the mistrust of vaccines. It was very clear that a lot of people were scared of the vaccine. That fear was increasingly caused because the politicians and people promoting the vaccine were not, or did not appear to be, trustworthy. To be fair, the vaccine had been produced almost like a rabbit out a hat—completely unexpectedly, like magic, very quickly, without thorough testing or going through the usual regulatory formulae. Of course, people started to get a few symptoms or side-effects, some of which were later quite serious.

There is an interesting connection between those two issues. A person who is ill might benefit from test and trace but, with a vaccine, it is best for everybody else but not you to be vaccinated. Herd immunity will suit you just as well and you would not run the risk of having the vaccine. We could have learned that from the outbreak of measles in London, just 15 years ago, when government officials were telling people that they must have the vaccine. We saw mothers holding their babies on television. The ethical responsibility of the mother concerned is to make certain that her baby is not harmed, but the great harm might well be the vaccine that she is about to receive for the baby. It is a failure of understanding and of dialogue between people.

We must recognise that we need to do much better with public engagement. The public engagement between the Government and the populace was woeful in the pandemic. The press and rumour-mongers often did not help, neither did the various media, but this is something important that we should consider.

I ask the noble Baroness to address this in her reply to the debate. The Blair Government made a considerable attempt to increase our understanding of how we might better engage the public by giving them better information and having dialogue with them. That worked very well. We were trying to tackle some big issues at that time. One was nuclear waste, another was genetic modification and another was the new nanotechnology coming into medicine, which was puzzling because of different effects at different cell levels.

We have to recognise that a Government cannot succeed unless they are trusted. I hope that this side of the House recognises that over the next few years. I do not pretend for a moment that it is simple to do. While I cannot comment on the Prime Minister at the time, Boris Johnson, I do not think that Asquith was trusted by the populace during the pandemic of 1918-19 and the Great War beforehand. But it is important that we try to find ways to trust.

One of the most interesting lessons was in the Reith lecture given by the noble Baroness, Lady O’Neill, who touched on this. We should go back and look at some of the things she said, as well as at our Select Committee report on science and society. We need to understand how we can do this better, because otherwise we will always have these problems in science. We need to be much clearer about how we will deal with them in the future, and I hope that this new Government try to renew interest in some of those issues.

--- Later in debate ---

[Lord Whitty (Lab)]

My Lords, as the last speaker from the Back Benches, I do not intend to comment on everybody’s speeches, but I do hope that the noble Lord, Lord Hannan, makes his own submission to the inquiry, because it is a vital point. I would like to see how the inquiry and its advisers deal with his point. I say no more.

It is probably just as well that I do not comment widely because my own expertise in the health field is limited to virtually nil and my experience with pandemics relates to my period as a Minister dealing with the foot and mouth epidemic; in other words, in the livestock area. While there are vast differences, and the authorities in livestock epidemics have means of controlling them that would not be acceptable to the human population in any civilised society, there are also some features that are the same. Principally, those are that the authorities in the agriculture and related sectors did not have a very clear plan; there was no mutual understanding between the industry and Defra; we changed our policy several times during the period; and probably more cattle—or beasts in general—lost their lives than needed to.

There have been inquiries into that epidemic and inquiries into this pandemic. On my count, there have been—I think the noble Lord, Lord Lansley, referred to this—six key inquiries into what to do in an epidemic, beginning with the one after SARS in 2003 and going right through to the recent one in 2018. The one common feature that is clear—the noble Lord referred to this—is that there were a lot of recommendations, some of them were taken up, many of them were not, and many of those that were taken up were dropped or severely modified. I hope that this inquiry produces recommendations that can be sustained and that health practitioners, scientists and everybody is convinced at least by the main thrust of the inquiry’s recommendations. The module that we have already received will be supplemented by much more detailed ones, but it already raises a number of very serious concerns.

The fact that those inquiries have not been followed through by successive Governments is a worry, and I hope that we can have a very serious follow-through by something like a resilience structure in government, which my noble friend Lord Harris referred to, and that that will have clear backing from Parliament and the new Government.

I want to end with one final, crucial area that has not been touched on. The theme of the report is referred to in terms such as “putting into place”, “failing to put into place” and “needing to put into place” contingency plans for a surge in resources, particularly during the immediate response. My namesake Professor Chris Whitty —no relation—expresses it as a way of stopping a pandemic in its tracks. Three things have to be in place to do that during any form of pandemic or virus-based epidemic: testing; tracing; and making sure that all the equipment required, from PPE to syringes and everything else, is already in place and can be stepped up according to the severity of the epidemic.

I asked Ministers in the previous Government about the recommendation in some of these reports that we get agreements in place well in advance to sort out not only the incredibly complex governmental structure—it is reproduced in the report and involves an incredibly complicated network of bodies—but the resources in private, university and research areas. For example, there needs to be an agreement so that, as soon as a pandemic becomes evident, a system makes available laboratories in the public sector and in the rest of society, together with testing arrangements, and makes the availability, specification and distribution of PPE clear well in advance. In order to do that, public sector bodies need to have in place as soon as possible protocols on those facilities becoming available as soon as a pandemic is declared. In the private, educational and research sectors, we need to have protocols—contracts, in effect—with money paid up front so that those private facilities will be transferred into producing as soon as possible the equipment needed to test and trace, and the materials and equipment needed for combating the pandemic. They would therefore drop research work and commercial ventures, because those stand-down contracts were already available.

I asked the previous Minister—it was not the noble Baroness, Lady Neville-Rolfe—some months ago whether such contracts were already in place, but I have to say that I got a rather equivocal answer. I ask the Minister, and the previous Minister if she cares to comment, whether, if a pandemic started or was clearly threatening us tomorrow, we would have available those facilities.

[Lord Winston (Lab)]

I am grateful to my noble friend for giving way. This is a time-limited debate, so I shall make just one point. There was a public service laboratory that was closed down. It was a wonderful institution that many noble Lords will remember. It is something we should have not just for a pandemic, but as a continuous resource for unexpected and unusual things that affect the nation, particularly bacteriology.

[Lord Whitty (Lab)]

I thank my noble friend for that. That shows that we are going backwards with public facilities, but private and other facilities also need to be mobilised immediately and a judgment made on how long we need to do that, according to the success or otherwise of our control of a pandemic. I put it to the Minister in the new Government that if that has not yet been put in place on a wide scale, it should be one of the priorities. I hope she can reply positively on that. I also hope that industry research labs of all sorts would respond. In the previous case, we were panicking to get them in place, and it led to some corner-cutting that in turn led to accusations of some dubious behaviour. I do not want to go into that, but if we had systems in place already, none of that would be a problem. Since nobody else has mentioned it, I hope the Minister and the ex-Minister can reply and give me some assurance on that basis.

Vaping Products: Usage by Children

Lord Winston Excerpts

Monday 2nd September 2024 Lords Chamber

[Lord Winston (Lab)]

My Lords, the House should be really grateful to the noble Lord, Lord Storey, for introducing this debate. There are a few matters that I would perhaps want to wrestle with him about on this.

First, smoking vapes has been going on for a lot longer than the noble Lord said. In fact, the first vapes that I came across were invented by Herbert Gilbert, a scrap metal dealer in Pennsylvania who had nothing better to do but smoke cigarettes—he smoked two packets a day. Eventually he devised a very similar machine to the one that we have now, which was battery driven—it has been around a very long time. However, it did not take off—he took out a patent but it did not work—and since then there have been several attempts from various companies. It is only recently that there has been this sudden massive surge in interest in vapes. Of course, that includes what is really important and what I think the noble Lord forgot to mention: the need for research into what is happening.

There are many serious unknowns in the things which people say are proven about vapes. I do not want to argue the toss entirely, but certainly one problem we have straightaway is that most of the studies in the literature—by the way, hundreds of studies can be seen which are recorded; for example, in the National Institutes of Health database—show that in fact, many studies have been funded by the tobacco companies.

The effects of vaping are still unknown. The amount of nicotine in a vape is about 1/20th of what it is in a cigarette, and a whole pack contains perhaps up to 200 milligrams of nicotine, while a vape contains probably something like 1/10th of that. However, one of the problems is that none of the researchers have really measured the number of puffs a day, nor the number of vapes which are taken, so some basic quantification is needed.

No clear health effects have been recorded in the literature. There are many suppositions about laryngitis and cancer—one of the very first things reported in the 1960s but which was probably from smoking cigarettes. There is no measure of dose, no numbers of puffs and so on, and such basic data are needed.

There is no question that there is possible serious damage from vapes, but it is not certain. For example, there is some evidence of possible cellular damage in the lungs and trachea, but nobody has found what one hoped to find—or, rather, did not want to find—which is carcinogenic effects. There have been no cancers in any research that I can find. There is no DNA damage, which is interesting, because cigarettes definitely cause DNA damage. There are psychotoxic effects. Cytokines such as interleukins and inflammatory products are occasionally produced, but this will happen, for example, during a heavy cold, and they do not lead to long-term effects. There is a problem with that.

Heat may be an issue with hot vapour. One problem now is that heat-not-burn cigarettes are available; they are used for marijuana, because it needs a much higher temperature to vaporise than does tobacco. You can heat tobacco just sufficient to get the nicotine but with marijuana you have to heat it much more. That may be much more dangerous, and certainly must be looked into.

Overall, it is clear from spectroscopy that has been done that there are at least 80 different compounds in the vapour of different vapes and they are not standardised. I argue that this is something that we need to think about. Clearly, there is no regulation of vapes and no regulation of what they contain. That is what we should argue for initially, until we understand it better. It is true that this has attracted American attention. President Trump was the president responsible for banning vapes for kids, which is interesting. We need to do that.

I end on a nice bit of good news. Vapes do not seem to harm fertility. I am pleased to tell you that studies by doctors in Germany have shown that neither fertilisation nor embryo growth are affected by this. This is important too, because women worry deeply about smoking in pregnancy. I am not going to say whether it is a good or bad thing in pregnancy; that is not the point. I want to emphasise that the research is not adequate at the moment to make very clear judgments about vaping.