In Vitro Fertilisation: 40th Anniversary

Baroness Deech Excerpts

Thursday 13th September 2018 Lords Chamber

Moved by

[Baroness Deech]

That this House takes note of the 40th anniversary of the first baby born using in vitro fertilisation.

[Baroness Deech (CB)]

My Lords, let us celebrate the birth of Louise Brown in July 1978, a revolution in reproductive science and a British first due to the work of Dr Robert Edwards, a Nobel Prize winner, and Dr Patrick Steptoe. The government response was to establish a committee, chaired by Baroness Warnock, to look into the repercussions. Her 1984 report of the Committee of Inquiry into Human Fertilisation and Embryology paved the way for the establishment of the Human Fertilisation and Embryology Authority in the 1990 Act. Baroness Warnock famously said:

“People generally want some principles or other to govern the development and use of the new techniques. There must be some barriers that are not crossed, some limits fixed beyond which people must not be allowed to go. A society which had no inhibiting limits, especially in the areas of birth and death, of the setting up of families and the valuing of human life, would be a society without moral scruples, and this nobody wants”.


These should continue to be our guidelines for the future, whatever it holds.

As well as establishing the HFEA, which I had the honour to chair for seven years, the 1990 Act provided for the licensing and storage of embryos, a database, and the use and donation of gametes in treatment and research. The 2008 Act provided further for research on embryos, for same-sex and unmarried couples, surrogacy and a ban on sex selection.

The UK is a world leader in embryology and IVF. Our regulation, which is studied in many other countries, has provided responsible conditions for research and has safeguarded the health of parents and babies. This is the opportunity to thank the Lord Speaker, in his earlier incarnation as the Secretary of State for Health, for getting Baroness Warnock to write the report and for kick-starting the whole process. It is an example of his forward-looking attitude to public health. The noble Baroness, Lady Bottomley, also played an important part in getting the Bill through.

Fortunately, the HFEA has survived at least two attempts to get rid of it by amalgamation. It has stood the test of time and provided a safe haven for new developments like mitochondrial donation. A few limitations will be noted, but we should celebrate the overall success of this British achievement—a magnificent anniversary for the potential of parenthood and for the prospects that embryo research have opened for good health. More than 8 million IVF babies have been born worldwide, 300,000 of them here. By 2100, 3% of the world’s population may be due to IVF. One in six couples has fertility issues. Some 41% of treatments are on the NHS, but availability varies by region for financial reasons. Only 24 clinical commissioning groups offer three cycles of IVF, in line with the NICE guidelines, while seven offer none at all. Moreover, the conditions applied by those that do offer IVF vary, such as being under a certain age or not already having children.

What happens if you have to pay privately? The cost is exorbitant. The HFEA has no remit over price. The cycle of treatment can cost up to £5,000 and there are stories of pricey add-ons being offered without proof of their efficacy. Many people go abroad for treatment because they are deemed unsuitable here, because of the cost, or to avoid the identity of the donor ever being disclosed. There is freedom of movement for such services, but the standards applied in other countries may well be inferior to ours—for example, in screening sperm for disease. They may be more lax about the use of multiple embryos, resulting in a multiple pregnancy. The woman treated abroad comes home to deliver, say, triplets in a UK hospital with the attendant expense and risk that comes with triplets.

The estimated cost of providing full NHS fertility services is £77 million. This would be money well spent because cuts in NHS provision may tempt doctors to transfer more embryos than they should, with the resulting costly multiple births. The percentage of multiple pregnancies through IVF has dropped from 25% in 2008 to 11% in 2016, and this decrease needs to be sustained. Multiple pregnancies are three times as expensive as single ones, sometimes giving rise to emergencies in pregnancy, ill health conditions in the babies, and costs to families both psychological and financial. Regulation must resist the blandishments of doctors to maximise success through the transfer of multiple embryos.

There has been a rise in pre-implantation genetic diagnosis of embryos, enabling parents with a genetic disease to choose healthy embryos. It is possible to screen for about 400 serious diseases. There is no international legislation on this, leading to fears of designer babies. Egg freezing for social reasons and for the preservation of the fertility of cancer patients has increased to more than 1,000 per annum. The techniques for freezing eggs are improving and the topic needs to be revisited because the 2009 regulations on the statutory storage periods for gametes were drafted before freezing became a real option. Freezing enables women to start to balance personal and professional life choices. The basic 10-year limit on storage needs to be reviewed urgently. If a woman freezes her eggs at the age of, say, 25, they will be disposed of when she is 35 so they will not be available to her when she is most likely to want to use them—and even more so if she freezes them when she is in her 30s. If they are allowed to perish, she will be forced to use the more expensive and inconvenient donor eggs.

The regulations as they stand are discriminatory and may be contrary to Article 8 of the European Convention on Human Rights because sperm can be stored for 55 years. The 10-year limit on eggs is wasteful. The cost of treatment and annual storage charges are very high: a few thousand for the removal of the eggs and then a rising charge every year for storage—a charge which a woman has no choice but to meet, and in the end all that is wasted. An extension could be effected by regulation, as allowed by Section 14(5) of the Human Fertilisation and Embryology Act 1990, by adding a ground for extension such as the woman not yet having made a decision about use or not having completed her family. Alternatively, it could be achieved by a panel allowing extension on a case-by-case basis. I want an answer from the Minister on this.

Mitochondrial donation is another British first, which noble Lords will recall debating in this Chamber in 2015 when the regulations permitting it were approved. The UK was the first country to license gene editing in research and mitochondrial donation in treatment: that is, a second mother providing normal mitochondria for the egg of the carrying mother to free a baby of disease.

All these advances mean that the debates continue about the moral status of IVF and the embryo. We should be wary of too much pressure being put on women to pursue treatment at all costs and of treating men as mere sperm donors, along with the pursuit of perfection. Commodification of the male contribution is regrettably a consequence because the treatment and effects tend to be focused on women. The man’s consent was deemed necessary in the Natalie Evans case, but was totally overridden in the crowd-pleasing judgment in the Blood case, luckily undone by later legislation.

The burden of guilt on the shoulders of the infertile woman seems especially heavy in societies where wives are valued for not much more than their fertility. A message taken from reflection on the 40-year history of treatment is this: every woman, like every man, is worth while as her own person without having to be a mother. No childless woman should ever be made to feel that she can be perfected and given a role in life only by being subjected to every reproductive technique that can be provided at limitless expense. There has to come a time when a caring doctor should consider the infertile woman’s future with her if the treatment does not succeed.

IVF has responded to and been influenced by changes in family structure, providing egg donation and surrogacy for older parents and same-sex couples, and PGD and mitochondrial transfer to help parents avoid disease in their children. Anonymity in sperm donation has ended and children will be able to get information about their fathers if they know that they are IVF-conceived. This will have an impact on our views of biological and social parenthood.

What is coming down the line? Excess embryos have enabled human embryo research, for example into miscarriage and growth defects. They may be kept for only 14 days from fertilisation—a limit that requires re-examination now that embryos may be kept viable for longer. Researchers have reached a point where they are beginning to think about experimenting on embryos up to 28 days old. This is too controversial; it would reignite bitter divisions over the nature of the embryo. As chair of the HFEA, I have been asked when the embryo or foetus is viable; I am sure that many religious leaders have been asked the same question. In Judaism, the answer is quite simple: only when it has graduated from law school.

In any case, scientists are only just beginning to keep an embryo alive for 13 days. Despite the great medical advances that could come from watching the crucial period in human development in the first month after conception, the time is not yet ripe for extension, as was said by Baroness Warnock. The birth of a cloned sheep, Dolly, in 1997 led to studies on human embryonic stem cells and stem cell research. Cells may be used to grow tissue for regenerative medicine, such as for heart disease or Parkinson’s. Genome editing—the removal of heritable characteristics from embryos, eventually editing DNA—is progressing. It is not yet permitted here, but the Nuffield Council on Bioethics recently reported that it might be permitted on a case-by-case basis if it is consistent with welfare, social justice and solidarity, and strictly regulated. Should it be? These issues need to be debated by Parliament well in advance so that they are understood and acceptable to the public and can be placed under satisfactory regulation.

I am concerned that the regulation of future genetic advances is overly complicated and difficult to navigate. Will our genetic future be as well regulated as our recent reproductive past? Following the Rawlins review into medical research in 2011, the plan seems to be that the Human Tissue Authority licenses establishments that are involved in handling and processing tissue, and monitors the quality, safety and traceability of cells used for human application—except in the case of reproductive cells, which are the responsibility of the HFEA. The Health Research Authority provides ethics review and authorisation for gene therapy medicinal products. The HFEA has to decide whether to license novel treatments that involve the manipulation of reproductive cells according to its own criteria. The Medicines and Healthcare Products Regulatory Agency provides marketing authorisation for medicinal products, including stem cell therapies, under the advanced therapy medicinal products regulations. Is that clear? Me neither. This regulatory pathway is apparently clearer to navigate for stem cell researchers than it used to be, but consistency between EU member states remains an issue. Researchers may well go to the member state with the lowest safeguards.

In 40 years, IVF and reproductive medicine have gone from simple infertility issues to matters of convenience and preference, such as the insemination of older women who are past the menopause, posthumous insemination, choosing the baby’s sex, and PGD for the purposes of eliminating inherited diseases or achieving the birth of a sibling with tissue that may save a sick older child. Then, there is cloning and stem cell work that may give us renewed tissues and the ability to live healthily for longer, if not for ever.

Just as the invention of the contraceptive pill 50 years ago divided sex from pregnancy, so IVF developments have separated genetic parenthood from childbearing, the embryo and pregnancy. Baroness Warnock’s slim report succeeded in harnessing the very different views of scientists, clinicians, patients, ethicists, religious people and politicians. Developments in IVF have kept in step with changes in the modern family and have put Britain at the forefront of innovative but safe research. I hope that Baroness Warnock is proud of the achievements of the regulatory structure to which she gave birth. I beg to move.

--- Later in debate ---

[Baroness Deech]

My Lords, many years ago, before I was in this House, I was summoned to give evidence to a Select Committee of the Commons about the HFEA. I had hardly sat down when the chairman looked at me and said, “Who do you think you are, playing God?” I did not miss a beat. I said, “I am playing God because that power was given to me by Parliament”. I mean, who else could give me such a power? It goes to show how important, and how efficient, our law-making has been in this area, largely because of the expertise that was evident in this House then and is still evident today. This topic shows just how valuable the membership of the House is—it is full of ethicists, doctors, obstetricians and gynaecologists, theologians, and other people who know how these things work.

I thank the noble and learned Lord, Lord Mackay, for his contribution; I also thank the noble Baroness, Lady Thornton, the noble and right reverend Lord, Lord Harries, and many others who, over the years, have pushed forward the legislation or helped to improve it, or have served on the HFEA. When we have debates in the future, as we must do, about surrogacy and genome editing, I expect that same expertise to show itself. It is a very good example to the outside world of why we have a second House and why many of our Members are appointed on the grounds of their expertise.

Guiltily and belatedly, I pay tribute to Jean Purdy, to whom I should have given credit. There is a certain element, in science generally but also in this field, of rather overlooking the contribution of women. My experience when visiting clinics and seeing patients was that IVF was very much something that powerful and confident men did to grateful, subservient women. I heard one in vitro fertilisation doctor say, “I have made a thousand women pregnant”. I wondered quite what was going through his mind and how badly he took it when it did not work.

There is another unsung female hero, if that is the right word: Mrs Brown. We appreciate the birth of Louise Brown, but let us imagine and reflect on the courage and fear that must have gripped Mrs Brown as she waited to give birth to the first-ever IVF baby.

[Baroness Barker]

We have talked today about how Louise Brown was the first IVF baby, but we have not mentioned the most wonderful thing of all, which is that loads of people in Oldham, some of whom I know, were invited to take part in this world-leading research programme. They took part not because they had money but because they lived in a United Kingdom that had a National Health Service. So it is absolutely right to mention Mrs Brown, but a whole load of men and women in Oldham, whose names will never be known, played a really important part in all of this.

[Baroness Deech]

I am very glad to hear that intervention from the noble Baroness. I have often thought about Mrs Brown and it is very sobering to realise how many other people contributed to the eventual success.

I look forward to this House debating changes to surrogacy reform, which I hope will come soon. I hope also that we will debate genome editing and how to regulate it in the future with the expertise that we have.

There is just one issue that I remain unhappy with. I think that there must be a missing letter. The noble Lord, Lord O’Shaughnessy, referred to a letter to me from, I think, Maria Miller. I wrote to the noble Lord in mid-July but I have no recollection at all of receiving a response.

[Lord O'Shaughnessy]

I am sorry to interrupt the noble Baroness. It was from my colleague Jackie Doyle-Price, the Minister. If it has not arrived, I absolutely apologise, and I will make sure that it gets to the noble Baroness as soon as humanly possible.

[Baroness Deech]

I contacted the noble Lord this morning to say that I had not received a response. I can see that something went wrong somewhere and I do not quite know what the response will say. I listened to the noble Lord but I think that relying on medical exemptions to the 10-year limit is insufficient. Many—indeed, an increasing number—of the women who want egg freezing do so not for medical reasons but for pressing social reasons, with which we should have sympathy.

Regardless of the science, there is no reason why, if you can keep your eggs for 10 years, you should not be able to keep them for 20 if that is suitable—and it can be achieved simply by a change in regulation. The pressures on women with the biological clock ticking and the cost of freezing are such that it is a pity to say to them, “Don’t wait for Mr Right. Time is ticking. Mr Average will have to do, or Mr He-Will-Do will have to do”. As has been said, it would not involve many women—but the fact that there are not many is no excuse for not changing the law. So I hope that the letter, which I have not yet seen, is sympathetic. I will continue to raise in this Chamber the issue of egg freezing until we get a change, because it means a great deal to many women and it will have a profound psychological effect on the way they lead their lives.

I conclude by thanking all noble Lords who have participated in this very meaningful anniversary debate, and I am even more grateful to those who have played such an important part in achieving this great British success over the last 40 years.

Motion agreed.