Queen’s Speech

Baroness Deech Excerpts

Tuesday 22nd October 2019 Lords Chamber

[Baroness Deech (CB)]

My Lords, the guiding principles of our health service are compassion, healing, prevention and equality. Every patient has their own concerns; all are to be treated as valuable individuals and not as units of whom we disapprove or with whom we have no empathy. Therefore, I again urge the Minister to find a way to show compassion and equality to a small but growing group of women who have frozen their eggs—a lifeline for women whose natural fertility is beginning to fade but who have failed to find a partner.

Typically, such women freeze their eggs in their early 30s, and the law is that they can be kept for only 10 years. Therefore, in their early 40s, when they might well think that the last possible chances of natural conception are ending, they will have to destroy those perfectly viable eggs. There was no logical reason for setting the 10-year limit. More than 1,000 women do this every year now, and the freezing technique has improved. The cost of egg removal starts at about £4,000, and then the woman has to pay whatever the clinic asks annually for storage—and of course she cannot refuse. At the end of this expensive journey, costing £7,000 to £8,000, there may be nothing except, to her, a mini death.

We should not condemn women who freeze their eggs because they cannot find a father for their longed-for baby. We should be sympathetic. The pressures on women when the biological clock is ticking are such that their psychological health is affected, and that is likely to make the forming of a permanent relationship even more difficult. No woman should be forced into the mindset of putting instant pressure on a new manfriend to procreate; or to settle for Mr Average or Mr He-Will-Do, rather than Mr Right, not least because such a man might not be the one to stick around and be a good father. Extending the time limit would actually lead to healthier practices, for a woman might then freeze her eggs in her 20s, when they are even more viable, rather than waiting until her 30s. Moreover, if her eggs have to be destroyed after 10 years, she may well resort to a donated egg, with the extra complications in that.

It has been argued that older motherhood is not a good idea and that a short storage period forces women to make up their minds. The law, however, lays down no upper age limit for the treatment of women. The law says that the clinician considering treating her should take into account the welfare of the potential baby and whether it will receive supportive parenting, thus each patient would be considered on the basis of her age, and there are plenty of births to over-40s these days. That is not to mention the lack of public disapproval of old men, such as the wrinkly old popstars on their fifth wife, whose new fatherhood is regularly celebrated in the media. It is not, therefore, for us or anyone involved to try to impose an artificial upper age limit on female procreation.

Another argument is that storage of eggs will increase to unmanageable proportions, but in the 40 years since IVF started, the number of embryos stored has increased by a huge amount without any trouble. Rules for storage for people who are, or are likely to become, prematurely infertile should be amended very slightly in order to accommodate the needs of women who have frozen their eggs. My Private Member’s Bill, about to be introduced, asks simply for consultation and suggests that where a woman has not yet completed her family—in her view, confirmed by a medical practitioner—the eggs should be stored for longer; that period could be confirmed by consultation, or could be 20 years, which really would be reasonable.

Women need the same ability as men to balance career aspirations and family- building. Extended storage gives them just this. They need a law that respects their human rights to a private life and to found a family. They need to be free of discrimination, for men can usually store their sperm for 55 years. Litigation about the human rights elements may take place, but how much more generous it would be for the department to consult and be kind.

A change would mean a great deal to many women and would have a profound and beneficial psychological effect on the way they lead their lives. Surely the Minister cannot deny the strength of this appeal to her better nature and that of her department. The Royal College of Obstetricians and Gynaecologists, the Progress Educational Trust and the British Fertility Society—in fact, the entire profession—have all written to her to urge consultation. The profession and the patients are united in calling for this. In these troubled times, a gesture of kindness would be profoundly welcome.

Human Fertilisation and Embryology: Frozen Eggs Storage

Baroness Deech Excerpts

Wednesday 20th February 2019 Lords Chamber

Asked by

[Baroness Deech]

To ask Her Majesty’s Government whether they have plans to review the compliance with human rights law of the 10-year limit for storing frozen eggs in the Human Fertilisation and Embryology Act 1990.

[Baroness Deech (CB)]

My Lords, I beg leave to ask the Question standing in my name on the Order Paper and declare my interest as former chair of the HFEA.

[The Parliamentary Under-Secretary of State, Department of Health and Social Care (Baroness Blackwood of North Oxford) (Con)]

My Lords, the Government reviewed all the provisions of the Human Fertilisation and Embryology Act 1990 in 2006-07, which led to the 2008 Act and associated regulations, including the 2009 storage regulations. I have been informed that the Government have no plans to formally review the relevant provisions in the Act on gamete storage at this stage. The department’s legal advice is that the current law appears to be compatible with the relevant human rights law.

[Baroness Deech]

Does the Minister appreciate that this lack of compassion and misunderstanding of the law is going to bring defeat in the courts soon? The storage period of 10 years for frozen eggs was set when little was known about the science, so women either exercise that option when they are at the best age—say, 25—and have to have them destroyed at 35, when really needed; or wait until a less optimal age and still have to have them destroyed when most needed, the entire exercise having cost thousands of pounds. Will the Government not enact a simple regulatory change, costing nothing, which will end this interference with private and family life under human rights law—and the indirect discrimination—and give hope to thousands of women?

[Baroness Blackwood of North Oxford]

I acknowledge that there have been societal changes which have led to women having children later, and technological advances in fertility treatments and freezing. However, I do not agree that the regulatory route that the noble Baroness proposes would be appropriate, as it was not envisaged at the time of the legislation. The strength of this regulation is that it had clinical, parliamentary and public support; given that this is such sensitive legislation, I hope we can continue that going forward. That is why the Government and I believe that continuing with primary legislation is appropriate.

Organ Donation (Deemed Consent) Bill

Baroness Deech Excerpts

2nd reading (Hansard): House of Lords
Friday 23rd November 2018 Lords Chamber

[Baroness Deech (CB)]

My Lords, at first sight this Bill is welcome and straightforward. It certainly is welcome, and appreciation is due to the noble Lord, Lord Hunt, and to all those who have promoted it.

I admit that my views are coloured by having been chair of the Human Fertilisation and Embryology Authority, dealing with associated but by no means identical matters. During my tenure, we had to deal with the Diane Blood case, where sperm was removed from her husband just before and just after his death without any consent. Of course, consent is absolutely central to the Human Fertilisation and Embryology Act. The lack of consent was got around by referring in part to the European law on the free movement of goods and services, which apparently included sperm. Nevertheless, the removal of the sperm was a flagrant breach of the law. The law was re-emphasised in the later statute, which pointed out that one cannot take anything from a body, alive or dead, without consent. This Bill goes the other way. Of course, sperm is not an organ, but I thought I should refer again to this notorious case, which highlighted the importance of consent.

As has been said, the BMA supports the shift to an opt-out system. In Wales, which has an opt-out system, consent rates rose from 58% to 72% in the two years to 2017, albeit reflecting very small numbers. So I give a hearty yes to the principle, but with a few words of caution and support. The BMA calls for the appropriate,

“publicity and engagement with the public”.

It highlights the need to balance increased donation with,

“the wishes and autonomy of those who donate”,

and their families.

Somewhat surprisingly, the very expert Nuffield Council on Bioethics did not originally recommend a change to an opt-out system, because, as it said, there was a,

“lack of evidence that such a change alone would increase organ donation rates”,

and because of ethical concerns about the operation of the scheme. Now, the Nuffield Council, accepting the situation as it is in this Bill, emphasises how it can be made to work ethically. It says,

“it is vital to have measures in place that encourage people to express and document their wishes about organ donation during their lifetime”.

A free choice in this or any other field is only legitimate if people are well informed and aware of the significance of their choice.

The Nuffield Council further says that,

“information about the donation process must be easily accessible”.

It is not enough to have a publicity campaign when this Bill is passed. It needs to be maintained on an ongoing basis so that those who might donate, but are not thinking about it now, are as aware in the future as those who benefit from the publicity that will no doubt accompany this Bill’s success.

The Nuffield Council also says that families must,

“stay at the heart of the decision-making”,

process, and that their refusal of consent should be respected even where the deceased indicated a willingness to donate. To appear to have lower regard for the wishes of the family in their moment of bereavement would make their dilemma even more poignant and might make others suspicious of what might happen when a loved one dies.

The Nuffield Council suggests that a solution is to invest further in the network of specialist nurses for organ donation, who can support bereaved families. So the Nuffield Council is opening up the debate to the wider context and emphasising the need to maintain trust in the system. This is important when one recalls the Alder Hey scandal of retained organs 30 years ago, which led to the Human Tissue Act and dealt a serious blow to public trust in the handling of tissues and organs by hospitals—trust which has only now recovered and should not be risked again.

I should point out that one can also foresee legal disputes over the meaning of the provision in the Bill that there is no deemed consent where friends or family provide information that would lead a reasonable person to conclude that the deceased would not have consented to donate in his lifetime. That is in Clause 1(4) inserting the new subsection (6B) into the Human Tissue Act 2004. Any legal delay in decision-making would necessarily be fatal to the successful removal of the organ, which has to be done swiftly. I envisage that any information brought forward at the time of death that the deceased might not have consented, reasonable or not, would act to stop the removal.

There were also concerns on the part of faith groups, which I believe have been successfully addressed and handled. The Government should be thanked for listening. In Judaism, as the noble Lord, Lord Leigh, said, there is nothing more important than saving a life. Religious strictures yield to that, and donating organs is invaluable. Jews and some other faith communities have a commitment to bodily integrity that extends through life to death. Therefore it is critical for them to retain an element of donor and then family control in the system.

The letter from Ms Doyle-Price, Parliamentary Under-Secretary of State for Mental Health and Suicide Prevention—what a bag of responsibilities she has—which the noble Lord, Lord Leigh, referred to, was sent to the Board of Deputies of British Jews, dated 25 October, and was very welcome. The Board of Deputies represents mainstream Judaism. In that letter, the Minister confirmed that the concept of deemed consent applies only in the absence of a decision by the deceased or their appointed representative to consent or not consent, and that the method for signifying non-consent is not limited by the Bill.

The letter also said that, if an individual cannot be identified or a person in a qualifying relationship cannot be found, the organ donation will not take place, since they have to be consulted. Individuals will also be allowed to consent to donate organs selectively or conditionally. And a new faith option will be included in the organ donor register, where organ donors can request that their faith is taken into account when organ donation is in issue; the text on the register will say, “I would like NHS staff to speak to my family and anyone else appropriate about how organ donation can go ahead in line with my faith or beliefs”; and appropriate agencies will engage with faith and minority communities in developing guidance that addresses those concerns.

This letter provided faith and minority communities with the comfort that the change in the organ donation system will respect beliefs while helping to save lives. Along with the noble Lord, Lord Leigh, I ask the Minister to confirm that those assurances will be upheld.

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.