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.