Genome Screening: Newborn Infants

Lord Winston Excerpts

Thursday 18th September 2025 Lords Chamber

Tabled by

[Lord Winston]

To ask His Majesty’s Government what plans they have to screen the genomes of newborn infants for different genetic conditions.

[Baroness Thornton (Lab)]

My Lords, I beg leave on behalf of my noble friend Lord Winston to ask the Question standing in his name on the Order Paper.

NHS: Private Equity

Lord Winston Excerpts

Wednesday 25th June 2025 Lords Chamber

[Baroness Merron (Lab)]

I understand the noble Baroness’s concern, but perhaps I could assure her and your Lordships’ House that it was decided this week by the board of Assura to recommend to shareholders an offer from Primary Health Properties, which is another UK real estate investment trust, similar to Assura, which is focused on primary healthcare premises. It is the case—or was the case, depending on how you look at it—that there was another bidder for Assura: KKR. As the noble Baroness said, KKR is an American private equity and investment company, but it seems very unlikely to be successful at this stage. The assurance I can give the noble Baroness is that a change in ownership does not affect the legal status of existing lease arrangements. I would also say that the ownership of the general practice estate is very much a mixed model in which GP practice buildings can be leased from a variety of landlords, including companies such as Assura, which actually constitute quite a small proportion of the overall estate.

[Lord Winston (Lab)]

My Lords, given that there are a vast number of overseas investments in different areas of private medicine in London—for example, in vitro fertilisation, much surgery, and so on—can the Minister tell us whether there is any fundamental difference between this and Assura healthcare? Providing it is under the proper regulation of the NHS—which I believe it is—there is no particular harm that we can identify.

[Baroness Merron (Lab)]

My noble friend is quite right. What matters is the assurances that are in place to enable provision to be made, whether that is on the estate or on services, as my noble friend refers to. I can certainly assure your Lordships’ House that in preparation for this discussion of course I asked the question: are there risks? I am assured there are no risks about which we need to be concerned.

Preterm Birth Committee Report

Lord Winston Excerpts

Friday 6th June 2025 Lords Chamber

[Lord Winston (Lab)]

My Lords, I pay tribute to my noble friend—to misuse the convention—Lord Patel, who, as usual, was an outstanding chairman, as he has so often been for the past inquiries with which I have been associated. I thank him very much indeed.

There is no point in making a treatment unless you can make a diagnosis, and the diagnosis must depend on the understanding of the cause. The problem, frankly, is that various causes have been postulated for over 40 years in this area. I will take a slightly different line, because, otherwise, I will only repeat what the report said and what will be said by others in this debate. I suggest that we need to link much more closely the loss of babies in the uterus well before term, in the early stages of pregnancy—namely, miscarriage—with preterm birth, because the causes are almost certainly related and important. I will discuss this in my short speech.

So many causes have been suggested: chromosome abnormality; changes in the DNA; different genetic predispositions; abnormalities of gene expression; hormone imbalances; metabolic problems; immune changes; molecules that affect implantation; the insufficiency of the placenta or afterbirth; anatomic abnormalities of the genital tract; failure of the eggs to mature properly; blood flow abnormalities; vaginal, oral, uterine and gut bacteria; and infections by either viruses or bacteria and parasitic infections. The fact is that it is very difficult to decipher where we are going with this research. I regret to say that much of the scientific evidence we have received has been rather confusing. The evidence has not been well focused, and we need to consider why that is the case.

There are also associations with the environmental factors that my noble friend Lord Patel mentioned, including pesticides; pollution; smoking; poor diet; alcohol; ingestive toxins; aberrant weight, such as obesity; male and female age; and, obviously, the link with infertility, which is the area in which I am particularly interested. We do not understand why it is more common in some animals than others. We know, for example, that it is not particularly common to lose pregnancies in primates. That seems to be associated with stress in primates and may be related to changes in family circumstances, particularly with the dominant male, which is quite interesting. I am not pretending to suggest that it is relevant here; the point is that it is just another example of why we are very much at a loss.

In 1987, I met a lady called Pamela, who had three preterm babies. They all died. She had one boy who died a few weeks after birth, in addition to the three who died before birth. She also had at least six miscarriages; she thought that she had had more, but she felt that the doctors were not regarding them as miscarriages. She had this constant problem. At one stage, her partner, not surprisingly, left her.

Pamela went on, finally, to deliver James. He was born premature and severely disabled at birth. It became obvious much later, when the medics came to look at him, that there was a genetic disease. The diagnosis of Lesch-Nyhan syndrome, a rare disease which usually affects boys but not girls, was finally diagnosed. Indeed, he was so disabled that he lived strapped in a wheelchair. He was not able to move his arms deliberately, because if he did, he would mutilate himself. Eventually his teeth were extracted because he was biting off his lips and tongue. That is the nature of that disease, which of course causes miscarriage.

After the diagnosis was made, we started to get very concerned about whether we could do some research to understand what was going on. We took three years to identify the diagnosis of Lesch-Nyhan syndrome in embryos. Two embryos were transferred at different stages, but Pamela did not get pregnant. Eventually, she had a normal baby, free of the disease, some four years after we started the research. Her NHS treatments, as noble Lords might imagine, were pretty costly. In fact, the costs of looking after that woman and her children were very considerable. Our research was not funded; in fact, we got our inadequate funding mostly by persuading women to cycle around the world on different bike rides. Those women raised huge sums of money because they felt very compassionately about the cause.

There are at least 23 million miscarriages annually, which means that about 44 pregnancies are lost every minute. The pool of single miscarriages is very high: over 15% of pregnancies are lost in this way. It is a massive medical problem, which is indeed linked to premature birth; sometimes it is a marker for premature birth. That is why we therefore have to consider these things together and why I am focusing on this in my speech today. If you add in premature births, you start to see the colossal consequences in handicap that we have seen, as well as the grave psychological problems that affect people. We need to consider this and ask: why is this happening?

When you look at world figures, it is very puzzling. In the studies of miscarriage, for example, prevalence varies across the world. You might expect it to be much more common in areas with poverty, but let us look at this in detail. Ethiopia is the country with the most serious miscarriage rate that I could find; it is about eight times more common there than it is in the United Kingdom, and the country is certainly very poor. It is also far more common in Guyana and Bolivia. In Eritrea and Zambia, miscarriage is quite prevalent, but in Malawi, which is perhaps the poorest African country of them all, the rate is actually not much dissimilar from that in Britain. That is very interesting, but quite unclear. It is clearly not related to the causes that we imagine are associated with poverty—poor nutrition, smoking and so on. There are a lot of other things going on.

There are many things that we could do which have not been mentioned here. One is this: we have to understand, and have much better recognition of, people who are going through miscarriage, with the proper recording of what is going on and, indeed, with much more investigation at the expense of the health service. I plead with my noble friend Lady Merron that she might see how we could do that. These investigations are not that expensive, but pathology should certainly be part of it. Unfortunately, that is often missed out. We do not look at the products of conception when the miscarriage occurs; they are just ignored. Women come out of hospital without any idea of what has happened, feeling absolutely desperate and bereaved.

It is worth bearing in mind that these women remember the date of the miscarriage years afterwards. They do not have a funeral and they do not have any recognition from other people of what they have gone through; they do not even tell people at work, because of course they cannot. They, along with their partners, have to suffer alone, and sometimes with the very serious problem of continuing infertility, blood loss, and generally feeling really unwell from having had an anaesthetic and an operation, having never been in hospital before for any serious disease. We have to recognise that this is so important.

We have a great opportunity here to do that which we do so well in Britain. We are extremely good at cohort studies. We have, among other things, one of the best examples in Biobank. Biobank is making a massive difference at the moment. If you take the world of ophthalmology, we now begin to understand that Biobank is giving us clues as to the causes of macular degeneration, which has a whole range of causes, just like infertility and other such things. We can now see specific genetic predispositions, which in the next few years is going to lead to much better treatment of this blindness, which prevents people being in work, for example.

I urge the Government to think about this, because this scientific research is much needed. There is a strange paradox here. In the data Bill, we have discussed science, but we have forgotten that science is often due to serendipity; it is not related to careful recognition. Looking at figures in the right way is serendipitous. It is very likely indeed that, if we did that properly, with proper data collection, we would end up with some very useful hypotheses. If we did that then we would be able to focus research on the areas that are most relevant, and we would make real progress in treatment.

This would be so much more than a blanket funding of lots of research. I do not think that that is what is needed. The research councils show that they have been funding up to 35% of grant applications, which is a very high number and much higher than in most other areas of medicine. What we need is much better research, and we need to do it if we are going to change the heartache and suffering, which is so often ignored, with totally healthy women going through this and being ignored. We need to do something about that. It would not mean masses of expense, but it would mean looking at how we do data collection in the NHS a bit better—which we can do—and trying to focus where we are going with better research, which, at the moment, is not in fact present.

Apricity Fertility Closure

Lord Winston Excerpts

Wednesday 12th March 2025 Lords Chamber

[Baroness Merron (Lab)]

As the noble Baroness will be aware, in November 2023 the HFEA published Modernising Fertility Law, in which it made a number of recommendations for urgent change, including around its regulatory powers. I will meet the HFEA chair and CEO tomorrow, and we will further discuss the regulatory challenges that the HFEA faces. I assure the noble Baroness that the Government are currently considering the HFEA’s priorities, including its role with digital clinics such as the one referred to, should an opportunity for legislative reform arise.

[Lord Winston (Lab)]

My Lords, the noble Baroness, Lady Owen, asks a most important Question, and I am grateful to my noble friend the Minister for answering it at least partially. I argue that much more of an answer is needed. Apricity advertised a success rate that was literally impossible; indeed, it was more than double the national success rate. Again and again, patients are being sucked into in vitro fertilisation—which may not always be the best treatment for them, just because they are infertile—because they think they will have a better chance of success than they actually have. It is time to be much more rigorous. As my noble friend the Minister is seeing the HFEA chair tomorrow, will she ask her how well the HFEA feels it is auditing the results it gets from clinics? In my view, many clinics are exaggerating, in all sorts of ways, what the success rate is.

[Baroness Merron (Lab)]

My noble friend raises an extremely important point, which I will of course cover in my meeting tomorrow. It may be of interest to know that the Advertising Standards Authority and the HFEA issued a joint enforcement notice in 2021 to ensure that fertility clinics and others were aware of the advertising rules and were treating consumers fairly. That remains in place. The ASA periodically reviews compliance with its rules. Its recent review in the fertility sector found far fewer absolute claims than it had found previously and that the level of compliance is good. That is not to say that it is good in all cases, and I agree with my noble friend’s point.

National Cancer Plan

Lord Winston Excerpts

Monday 10th February 2025 Lords Chamber

[Baroness Merron (Lab)]

The noble Lord makes an important point about what I would call unnecessary obstacles to innovation and technology—something which the noble Lord, Lord Kamall, also raised. I assure the noble Lord, Lord Kakkar, that engagement with industry is extensive. We seek to identify blocks to improving healthcare provision in this country so that we can take the necessary steps. I agree that there are obstacles. We will continue to identify them—working with industry, which is crucial—and to seek to fix them.

[Lord Winston (Lab)]

My Lords, the Minister mentions the amount of money being spent on cancer research, but it is a small proportion compared with what the life sciences actually earn in Britain through patent and basic research. As UKRI recently pointed out, £3.7 billion has been raised as a result. Does the Minister agree that the Government should perhaps consider reinvesting some more of that money into much-needed basic research, which is currently regarded as being underfunded, with very many projects not being funded as they should be?

[Baroness Merron (Lab)]

As my noble friend is aware, the NIHR very much welcomes funding applications for research into any aspect of human health, including all cancers. As with other government funders of health research, it does not allocate funding for specific disease areas. My noble friend is well aware that applications are subject to peer review and judged in open competition—in other words, to make awards on the basis of the importance of the research to patients and on value for money. I appreciate his observation about investment. It is an area to which we are committed and will continue to be.

First-cousin Marriage

Lord Winston Excerpts

Monday 20th January 2025 Lords Chamber

[Baroness Merron (Lab)]

The noble Baroness is right that consanguineous unions are decreasing. While it had the best data, the NIHR-funded study, Born in Bradford, to which the noble Baroness and I have referred, found that between 2000 and 2010, 39% of British Pakistani couples in Bradford were first cousins. However, that reduced by 27% by 2019, for the reasons suggested. Driving change across whole ranges of areas makes a difference, but it is important that we keep this in perspective and make any communications and support absolutely appropriate.

[Lord Winston (Lab)]

My Lords, surely, this Question is an example of the great value of our genetic science in Britain, and the excellence of the National Health Service in this area. In the Midlands, as the noble Baroness has mentioned, these diseases are common, but the progress we have made in their diagnosis and treatment—and, to some extent, prevention—has been quite remarkable and will continue. I have to add that many of the diseases are extremely rare in such families, and therefore what you could do about cousins in every case would be impossible, but the information being given is exemplary in most cases.

[Baroness Merron (Lab)]

I am grateful to my noble friend for those very informed observations, and I share the assessment that he has made.

Puberty-suppressing Hormones

Lord Winston Excerpts

Monday 16th December 2024 Lords Chamber

[Baroness Merron (Lab)]

I thank the noble Baroness for bringing her expertise directly into the Chamber. We are very glad that she is in the House to do so, and she has actually answered a number of the points better than I ever could.

I will emphasise one point that I am particularly interested in, because I know it has been raised a lot, about why the legislation is being laid in respect of the use of medicines just for gender dysphoria. The noble Baroness, Lady Cass, referred to this. It is really important to emphasise that the medicine might be the same, but the fact is that it is not licensed for gender incongruence or dysphoria—that is the key point. These medicines have not undergone that process, which means that safety and risk implications have not yet been considered. It is true that there are licensed uses of the medicines for much younger children or for older adults, but the issue here is about adolescents, and it is an entirely different situation.

[Lord Winston (Lab)]

My Lords, perhaps I might return to the conventional asking of a question to the Minister—a very quick question. There are a number of practitioners who are considering, if not giving, sex steroids to patients who are requesting gender reassignment; either oestrogen or progesterone, or the equivalent male hormone. Have the Government yet considered how patients will be treated in this situation? There are certain, clear dangers involved.

[Baroness Merron (Lab)]

I understand the point my noble friend rightly raises, and I emphasise again that what matters here are safety considerations—particularly when we are talking about children and young people—but also the evidence in respect of treatments, that there should be the prescription only of medication which is safe and appropriate to the actual patient and situation.

Bread and Flour Regulations 1998

Lord Winston Excerpts

Wednesday 11th December 2024 Lords Chamber

[Baroness Merron (Lab)]

Patient safety is at the forefront of this. I do not want to look backwards, but I gently suggest that there are all sorts of reasons for delays. Still, we are where we are now, and what is important is moving ahead. We are working closely with the Chief Medical Officers across the UK. We are very much in lockstep with the devolved Governments, and I think that will also assist.

[Lord Winston (Lab)]

Given the Government’s excellent initiative to reduce the serious risk of neural tube defects, which cause such despair to so many people, will they tell us where we have got to with fluoride addition to the water supply to prevent dental disease?

[Baroness Merron (Lab)]

My noble friend is right, and we anticipate that this policy will reduce the number of neural tube defects in pregnancy by around 200 a year. Those are life-changing brain and spinal defects, such as spina bifida. The question about fluoridation goes a little wider than I had anticipated.

[Lord Winston (Lab)]

I am sorry.

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.