Baroness Deech
Main Page: Baroness Deech (Crossbench - Life peer)(1 month, 3 weeks ago)
Lords ChamberThat this House takes note of the adequacy of the law on the regulation of fertility treatment.
My Lords, I declare an interest as a former chairwoman of the HFEA. When I was approached for the job, I explained that, at my school, we were not even taught what were then called the “facts of life”. It turned out that this did not matter, as the task of the HFEA chairwoman was to explain to the public, in language that everyone could understand, what was happening and the ethical problems. That is the approach that I am taking today.
The UK was a first in pioneering and regulating in vitro fertilisation. As in other fields, being first is something to be proud of, but it risks us falling behind what is required as the years go on—as in our railway system—and not being sufficiently visionary to encompass future developments. This is not to belittle the global achievement of Baroness Warnock and her committee, when they produced the report that laid the ground for the HFEA and its followers in regulation the world over. I hope that we can now once more be leaders in bringing that law up to date, future-proofing it and coming into line with societal changes. I am well aware of the complexities and time commitments involved in reforming the law, and the risk that legislators will pile in with restrictions and other issues that are not in accord with the root needs, but we have done it before, with Acts reforming the original Human Fertilisation and Embryology Act 1990, and we can do it again with a progressive government.
Many of the patients are desperate, and the clinicians are competitive. This is where the dangers of statistics become apparent. More important than generalities, the basic elements in statistics have to be the age of the woman being treated and the age at which her eggs were frozen. Clinics offer extras in treatment, for which the patient pays more, and it is suspected that they are not sufficiently improving to be worth it. These so-called add-ons need to be reported to the HFEA, which they are not at the moment. Another issue of concern is that the NHS does too little of the work. It is a postcode lottery. IVF is private, eye-wateringly expensive and commercialised. Of course, one understands that fertility treatment is regarded as of less urgency in the struggle for funding compared with life-threatening diseases, but it is a painful situation.
Since 1990, the fertility sector has transformed beyond recognition, with new technologies, new family structures, new ethical questions and new challenges for patients. When I started as chairwoman, the burning question was whether treatment should be offered only to married couples. Now, of course, same-sex and single people are provided for by statute. The HFEA itself acknowledges that, while much of the 1990 Act remains fit for purpose, it has been updated by statute only once, in 2008, and now contains significant technical gaps, outdated consent rules and insufficient regulatory powers. The HFEA has made proposals for modernisation.
At the same time, the law governing surrogacy, the Surrogacy Arrangements Act 1985, was drafted for a world in which surrogacy was rare, poorly understood and feared. Today, surrogacy no longer raises eyebrows, with the number of children born that way increasing fourfold over the last decade. However, with increased use comes the increased danger of exploitation of poor women and risk to their health and their babies’ welfare. Families are left uncertain in that situation. Clinics are constrained, judges strain the legislation to make it workable, and the UK risks falling behind in welfare protection. However, reforming surrogacy, and the very concept itself, is hotly contested.
Comprehensive reform of both areas is on the table, and we have before us two reform proposals—first, the HFEA’s 2023 proposals to modernise the law, and, secondly, the Law Commission’s 2023 recommendations for a new surrogacy framework. The HFEA proposals tend to an innovative, ethical, patient-centred system of reproductive law. The Law Commission’s proposals about surrogacy are different. As I have looked into this recently, I am less certain than I was that surrogacy and reproductive law can be resolved—certainly not in one statute. Parliament needs to take the lead in scrutiny.
The HFEA’s case is clear: the fertility sector has outgrown the 1990 Act; it has expanded dramatically in size, complexity and commercialisation. Clinics now operate in hybrid, online and in-person models; donor-conceived people have new rights to information; and scientific developments, from mitochondrial donation to embryo research, have outpaced the statutory framework.
Yet the HFEA’s regulatory powers remain narrow, limiting its ability to enforce patient safety and good practice. The consequences are inconsistent clinic standards, complex consent rules, legal uncertainty around parenthood—especially in cases of relationship breakdown and posthumous conception—and a regulatory regime that cannot keep pace with innovation.
Surrogacy law is far more controversial. The Law Commission’s review found consensus that the current law is outdated and unclear. The surrogate remains the legal parent at birth, even in gestational surrogacy where she has no genetic link to the child. Intended parents must apply for a parental order, a process that can take six months, during which they cannot make legal or medical decisions for the child; the child’s status is uncertain and so is that of the parents. But the interests of the surrogate are not fully considered, not least in that she may be burdened with unwanted legal responsibility or even left literally holding the baby.
Meanwhile, cross-border surrogacy is increasing, often involving commercial arrangements that UK law neither permits nor adequately regulates. We have all read concerning stories about poor women, often abroad—for example in Nigeria or Ukraine—delivering in war zones, with uncertain future steps to safeguard the baby. I have great respect for the Law Commission and its logic is impeccable, but its plans to reform surrogacy would reduce the time a surrogate mother has to change her mind. They would reduce the oversight by the family court and Cafcass for domestic arrangements. They would transfer rights to the baby at birth, taking away fresh consent from the surrogate, and they would relax other requirements and safeguards.
Children’s rights and mothers’ rights would suffer if the law tilted too much towards the commissioning parents and away from the surrogate mother. Although the commissions do not propose major changes for cross-border arrangements, they recommend improvements to immigration processes and the recognition of intended fathers for nationality purposes. One wishes that these international transactions could be more controlled or even prevented, but that seems to be impractical.
As I get older, my inner Mary Whitehouse has real concern about single male parent surrogacy and the exploitation of women. Surrogacy welfare checks must be made as stringent as they are for adoption. When I started to research this speech, I thought that surrogacy law and a reformed HFEA law could be combined in one. I am still convinced that there are urgent needs for HFEA reforms—even limited, such as statutory instrument provision for the possible extension of a 14-day embryo limit and protection for new types of gametes. But surrogacy still needs more wariness and consultation, not least because the HFEA seems unwilling to take on surrogacy regulation.
Public attitudes and family structures have changed. The 1990 HFE Act was drafted for a world in which heterosexual couples were the assumed norm. The 2008 amendments widened access for same-sex couples, but the underlying structure remains in assumptions that no longer reflect modern family life. So the HFEA’s 2023 recommendations focus on four key areas. The first is strengthening patient safety and regulatory power. They propose expanded inspection and enforcement powers to ensure that clinics meet high standards of care. The regulator must have flexible tools to protect patients—for example, fining rather than closing clinics.
We need improved access to donor information. Donor-conceived individuals can now access identifying information at age 18. The HFEA proposes going further: removing anonymity from birth for all future donations, with appropriate counselling and support. This reflects a growing consensus that identity matters and that donor-conceived people have a right to know their origins. It was once feared that the removal of anonymity would reduce the willingness to donate but, as it has become more acceptable, that fear is diminishing. Moreover, there are genetic search engines online, enabling people to find their parents without official interference. Frankly, there is no point in keeping the current identity rules, and donors and patients should be warned that it is unlikely that they can remain unknown.
We need to clarify the consent rules. The current regime has led to difficult litigation, especially in cases of relationship breakdown or posthumous use of gametes. The HFEA calls for clearer statutory definitions to protect all parties and reduce judicial uncertainty. Posthumous taking of gametes by violating a corpse is certainly not the way forward—not without consent. There should be automatic record sharing between clinics and the NHS central records system. This fits with the record-sharing provision in the NHS modernisation Bill and could be an amendment to it. There should be more reminders to patients that they can donate unused embryos to research. There is even a suggestion of a national embryo research bank.
We have to prepare for scientific innovation. As I said, I am no scientist and I will leave the details to the distinguished experts who are speaking in this debate. But there are three areas that impinge importantly on the foresight needed in regulation. They are the keeping of embryos beyond the 14-day limit, stem cell-based embryo models and in vitro-derived gametes. The extension of the 14-day rule is linked to the research capability required for the latter. It is being reviewed by the Nuffield Council on Bioethics, which is consulting with the public. In vitro-derived gametes are created by reprogramming other cells—for example, skin. Under current law, they could be used for research but not reproduction. The advantages are that they would eliminate the need for gamete donation, but they will need separate definition in the HFE Act, fresh consideration of the definition of parenthood and, of course, much more research.
The frameworks of regulation must deal with anticipated developments here and their ethics. There are also stem cell-based embryo models, which are lab-grown models made from human stem cells that mimic early stages of human embryonic development. They may verge on becoming real human embryos, and the voluntary code of practice developed in Cambridge needs to be embedded, with a view to developing a distinct method of regulating them—not bad for someone with no biology O-level.
What must Parliament do? It must modernise the Human Fertilisation and Embryology Act. Parliament should plan by setting up a Select Committee to examine the HFEA’s proposals to expand regulatory powers, simplify consent rules, modernise donor information provisions and create a flexible framework for future scientific developments. A Select Committee also needs to look at the Law Commission’s surrogacy reforms as a second-order issue. As I said, I am not at all sure about integrating fertility and surrogacy law into a whole.
The noble Baroness, Lady Merron, has said that the Government are deciding how to take this forward, and there was a Bill about this in the Commons last year. Let us start by updating our fertility law, in keeping with the UK’s history of an ethically cautious and scientifically informed approach, which has made us a global leader. Will the Minister move forward with a Select Committee and pre-legislative scrutiny of a draft Bill to reform the HFEA? I beg to move.
My Lords, this debate has consisted of highs and lows. One high, of course, is that it is wonderful that the House of Lords has so many world experts on infertility ready to speak today and contribute their knowledge. That is what we are all about. The lows I am coming to.
I can pick out only a few comments in the limited time left. The noble Lord, Lord Winston, quite rightly pointed out that there are underlying causes of infertility, but time is of the essence. When women are in their 30s or late 30s, there is not time to queue for medical investigations that could take years. The practice of IVF, including freezing eggs, has brought happiness to so many and should not be overlooked. This is an area where there are great disappointments but also great happinesses, and we should not overlook that.
I have been invited all over the world to speak about the virtues of regulation, in particular in the United States, which is regarded as the Wild West of this area. There, things go terribly wrong, because, as you would expect, autonomy and no interference is the theme there, leading many women to fall into severe traps and malpractice. From my limited global experience, I know that the HFEA and its model of regulation was widely admired and indeed copied. When they cut me open when I am gone, they will find “Dolly the sheep” carved on my heart, because, under my watch, the Scots made that terrific breakthrough that led to the use of stem cells. Because the HFEA was supervising that and being cautious, we have been able to advance with that treatment and research, and that is something we should be very proud of indeed.
How wonderful it is that a Bishop in our House should have had that experience. I was privileged to work with two outstanding bishops at the HFEA: Bishop Richard Holloway, who I am glad to say is still with us, a man of great heart and compassion, and, of course, the sorely missed Richard Harries was able to contribute. There was nobody better than him. How much we miss his voice in all areas of life.
On the issue of plastics, all I can say is that it is certainly worth looking at. I have had my own argument with Optrex—I am sure noble Lords all know Optrex—about glass bottles now being replaced by plastic. I wrote to ask why I should introduce plastic into my eyes. Of course, I got no reply, even though many other people objected as well.
The noble Baronesses, Lady Shawcross-Wolfson and Lady Pidgeon, and others mentioned surrogacy. There are great reservations about the practice of surrogacy. We must take this very cautiously, although it has of course brought joy to some people.
The Minister’s response is disappointing. I can see that she and no doubt her staff have taken all this into account, but time is of the essence, as I have said before. I call once more on the Government to get going and to set up a Select Committee and produce a draft Bill, which is what happened the last time the Human Fertilisation and Embryology Act was revised. It takes time but, if they do not start now, we will never get around to it. The Government need to draw on the expertise that was so evident in this House today. In future years, we may not have such a wealth of expertise. Now is the time to get going. It might well take some years, but the Government really need to set up that Select Committee and do the legislative scrutiny right now.
Let me end on a note of joy, because there has not been much of that. To serve on the HFEA was a joy and the privilege of my life. People of my generation thought we were clever in not conceiving. That was the big issue—it never crossed my mind that there were fertility issues. I learned that there were and how painful they were. To see the joy of people who have managed to have families, such as the right reverend Prelate and others I could mention, thanks to the expertise of the noble Lord, Lord Winston, and others was very special.
We are told that we live in a country where there are not enough babies. The HFEA is helping people to produce those much-wanted babies and I wish it well. It was a great privilege to serve. At the time, there were ethical considerations. As members, we had a bishop, a rabbi and an actress—you could not have a broader spread of input than that—and it all worked very well, with great results. I end by pleading with the Minister to get on with legislative reform for the sake of our health, growth in families and the joy of would-be parents.