Good afternoon and welcome to the Women and Equalities Committee. Today we are holding an oral evidence session on egg donation and egg freezing. We have two panels. On our first panel we have Laura-Rose Thorogood, founder of LGBT Mummies and, on the line, Dr Diane Tober, associate professor and medical anthropologist at the University of Alabama. Thank you and welcome to Parliament, both of you.

We would like to start with some very general points. Do the current regulations in the UK really provide the necessary adequate protections for the health and wellbeing of the people who donate or freeze their eggs?

No. Under the current protections women and people who want to freeze their eggs are not given any further psychological support. From the point of psychological safety there are no robust processes in place to ensure that they undergo a certain amount of implications counselling to address the psychological difficulties they may encounter now and in future and what that looks like for them as intended parents but also considers future donor-children. This is something that really needs to be re-addressed and should be mandated every time someone donates their eggs.

Dr Diane Tober, do you have any comment to make about how the UK’s regulatory framework for egg donation, egg freezing and safety of those donating or freezing compares internationally with the experience that you have?

The process is certainly far more regulated, in a reasonable way, in the UK than in the United States. In the United States, as you probably are aware, we have a very commercialised, unregulated market. Spain has some regulations around this and donor anonymity is also required, which does not take into account the rights of donor-conceived people and donor-conceived families to have access to the identities of their donors or, for that matter, for donors to potentially get to know the children and the families conceived from their eggs. The UK does a good job of having some flexibility in terms of allowing intended parents and the donor-conceived people to connect with their donors and have information about them. There could potentially be more counselling involved for donors prior to donation about the long-term impacts on their wellbeing, especially in light of ancestry testing and the ability for donors to access their information.

That is very helpful indeed. To continue with a couple of questions for you, there is some existing research on the long-term safety of IVF, which obviously involves the same egg collection procedure as freezing and donating. Given that is the case, is it necessary to conduct research on the safety of egg donation and freezing specifically? If so, could you explain why you feel that is the case?

This is something that has been driving my work for over a decade now. The challenge is that egg donors and infertility patients who are seeking treatment for their own infertility are not necessarily comparable groups. Egg donors tend to be much younger—in the US many of them are aged 18 to 25—and I saw that the average age in the UK is about 30. They can respond more aggressively to the hormonal stimulation protocols; I have donors in my study that have produced between 40 and 90 eggs in a single cycle. We do not understand how different types of trigger shots—hCG combined, agonist triggers and so on—impact donor health. I have far more donors in my study than would be expected who have experienced severe ovarian hyperstimulation syndrome, whereas it is often considered that they would be a low-risk group because they are not getting pregnant. You cannot really draw comparisons between fertility patients aged 30 and potentially even 40 with compromised fertility, and younger egg donors aged 18 to 25 or 30, chosen because of their high fertility, who tend to produce high quantities of eggs and also have low BMI. They respond differently, and often they are receiving the same dosages that infertile women are receiving, so you cannot compare these two patient populations.

Diane, when it comes to the long-term safety of IVF and egg collection procedures, you said there needs to be more research. Do we have a problem with the data? I understand that there are several countries that link their data and health records with their health organisations. In the UK the HFEA and the NHS do not share a database, so we struggle to find out the long-term impacts. Is there a country where this is working well and we are seeing greater information? If not, would you still recommend that link-up between HFEA and NHS databases?

I have not seen a single country that adequately tracks donor health immediately or over time. In the United States, for example, there are no reports that I have seen on tracking donor health outcomes, either in terms of OHSS rates, ovarian torsion rates, all the other complications and so on. The challenge for doing longitudinal research is that you really need to get the patients prior to their first donation cycle—or their first retrieval cycle—and follow them over time. I have done that informally with some of the participants in my study that I have followed for 10 years, and I have seen declines in health over time among a number of the donors in my study. In particular I have seen quite a surprising number of women aged 28 to 30 who are later diagnosed with low ovarian reserve. We do not know if that could have happened anyway without having the longitudinal study to track that, and to also look at other things like biomarkers in the blood or things that might affect ovarian ageing. One of the things that I would really push for, if you have the power to do it under HFEA in the UK, would be to start tracking incoming donors, incoming egg-freezing patients, and get that per cycle data of eggs produced per cycle, hormone protocols used, health outcomes per cycle, and OHSS rates and then start doing an annual survey to check up with the donors over time for maybe up to 10 years to see if there are any differences in the donor and freezing population compared with the general population. I am trying to start doing that in the United States with a prospective study that hopefully I will get funded for, but it is something that really needs to be done globally because we do not have that information—and without the information, how can you have fully informed consent?

That is very helpful and obviously we recognise what you are saying in terms of the limitations of the studies there have been. Perhaps you could tell us a little about what your particular research has found about the long and short-term health impacts of both egg donation and freezing—things such as whether there is any evidence that egg donation impacts on menstrual health or on conditions such as endometriosis, for example. You have probably covered pretty adequately the sort of data we should be collecting to actually assess those long-term impacts of egg donation and freezing, but it would be very interesting to hear perhaps some of the meat of your research on the first part.

Let me start off by saying that when I started conducting research with egg donors, I had no knowledge of the kinds of conditions that they would report. I had done earlier work on sperm donation and obviously never saw any kinds of health issues among sperm donors, and I was really shocked at some of the very first interviews I conducted about some of the things that donors had experienced. Again, this was in the US market, which could potentially be different from the UK market. That said, some of the conditions that kept coming up over and over again, in addition to severe forms of the ovarian hyperstimulation syndrome, were things like endometriosis that they had no symptoms of before. We do not know if ovarian stimulation causes endometriosis. I probably do not think it does but if somebody has a condition that is dormant in their body it could potentially wake it up, because endometriosis is an oestrogen-dependent kind of condition. Other kinds of complications that have been reported frequently among egg donors were menstrual changes that did not resolve within a few months and hormonal fluctuations, and I had a lot of donors report to me things like thyroid conditions they did not have before. This is in the survey data and again you cannot tell for sure if it is a causal connection or something that would have happened anyway, but the data that I have collected is enough to at least raise the issue that this is something that needs to be looked at. Another thing that I have seen quite frequently, especially in the US, is donors with PCOS. Women with polycystic ovarian syndrome tend to produce a high quantity of eggs. When I see a donor who is producing 35, 40, 50, or even as high as 90 eggs in a single cycle, I am pretty much attuned to the idea that she probably has PCOS and maybe knows it and maybe does not know it. In the beginning of a donor screening process the physician can conduct a test for the resting antral follicle count using a transvaginal ultrasound, so they have a pretty good idea about how many eggs she is going to produce prior to the hormonal stimulation. They can then choose to reduce the dosages of the hormonal stimulation to retrieve maybe about 20 of those 50 eggs. But especially with the egg banking model I see a drive to retrieve as many eggs as possible and try to mitigate the risks to the donor, which sometimes happens and sometimes does not. In terms of the conditions that I have seen, there was not that much ovarian torsion, but there was far more than would be expected of critical and severe ovarian hyperstimulation syndrome. I have seen donors that were asymptomatic prior to donation end up by the third donation having endometriosis all over their body and then being diagnosed with their own infertility. Those are the things that cause me concern that should be looked at prospectively to get a better idea of whether there is a causal connection or not.

Dr Diane Tober, thank you very much for your written evidence; I found it really helpful and interesting. The things that really jumped out at me were, first, that on the OHSS, you said that quite often a 1% rate is advised but actually in some of the studies you have done you have seen 39% for moderate OHSS. Secondly, you also flagged the diminished ovarian reserve, as you have just mentioned, and a potential cancer risk. Could you talk a little more about those studies; are there any other studies out there, and are other people finding the same things that you are? What are your thoughts on the need for more long-term health studies to properly understand this?

There is a range of studies out there on OHSS, some with donors and some with IVF patients. Most of those studies are based in a single clinic, so they are only getting the OHSS rates in that particular clinic. It is highly possible that some people find my study because they have had a complication and they want to talk to somebody about it, or they want to report it and get it on the record somewhere, so there could be bias in my data. That is why I want to start off with a prospective study, just to address that potential concern. One of the things that is really interesting is how OHSS is calculated in some of these larger studies; in many of them it is calculated on a per-cycle basis, not on a per-donor basis. In the link to the paper that I published on OHSS, I do both. On a per-cycle basis with, say, 200-odd donors over some 800-odd cycles, the critical OHSS is going to drop to around 0.5%, and the severe OHSS is going to drop somewhat. All those percentages will drop. I am interested in the woman: if a person decides to donate, what is their risk factor going to be? If they do one cycle, they might get out of it okay, but if they do six and there is a cumulative effect then that 1% quote goes out of the door, especially if you start tracking it by the donor rather than by the cycle. It is important for these studies to compare both the donors and the per-cycle rate, and that is the issue. The next topic you mentioned was cancer. There were a couple of very suspicious cancer reports in my data; the donors were both in the survey and I interviewed them. One was a 25-year-old three-time donor who produced about 30 to 35 eggs on each donation cycle. Within about a year of her third donation cycle she was diagnosed with a very rare form of cervical cancer that was not related to HPV, which is the most common cause of cervical cancer. Her oncologist told her that that kind of cancer was so rare it would only be expected to be found in an 80-plus-year-old and even then it would be considered rare. He also told her he thought that her egg donations had triggered her cancer. I am not a physician, so I do not know about that part, but she was told she had to have a hysterectomy and that she would never be able to have her own children. She ended up having the cancer removed and managed to have a child. Then there was a 10-time donor that I interviewed—I have heard of as many as 19 cycles being done in the United States, and they are not being stopped. This donor had found a lump in her breast around cycle eight—she was about 26, 27 at the time—and the doctor who was doing the egg donations told her, “Oh, do not worry about it, you will be fine.” She was sent for a mammogram that came back clear. About a year later she found out she had stage four invasive carcinoma of the breast that was also an oestrogen-positive type. This donor feels that the excess oestrogen from the donations likely triggered her breast cancer. When she was put on oestrogen suppressors and then eventually given a hysterectomy, her cancer went into remission. She is still in remission, but she has no uterus or ovaries and cannot have any kind of oestrogen in her body whatsoever, so she is now at greater risk for things like osteoporosis and cardiac problems, and she had no children. It concerns me when you have 18-year-olds, 20-year-olds, 25-year-olds—I have had a 16-year-old—going through these processes without being fully informed, having no eggs set aside for themselves, ending up with a problem at 25 and then being unable to have their own children. I will stop there but I am happy to have more questions on that if needed.

Laura-Rose, what concerns have you received from lesbians or other members of the LGBT community, including those from minority ethnic groups, who have undergone egg sharing or egg donation?

There is a lot of covert advertising going on within specific clinics and groups that is specifically targeting lesbian and other queer women and people, whereby they are offered money-off deals to share their eggs. If it is not viable for them to go through multiple cycles as they know that they are restricted financially, it gives them the opportunity to have discounted rates. We are seeing more exploitation around black and brown women and people who are being told that there is a UK or global shortage and that “There are heterosexual couples that need eggs from people like you. If you do this there is the opportunity that you will get a discount and we will support you to get pregnant.” Of course, we are hearing that some of it is quite aggressive and people are saying, “Actually, we don’t consent; this is not something we want to consider.” Some clinics are being quite pushy in that stance, which is pushing people either to leave the clinic or feel that they have to go ahead because this is their only opportunity—because as a marginalised community, many LGBTQIA+ people are not able to access NHS funding. Four out of 42 ICBs currently give female same-sex couples access, but that does not include trans or non-binary people, or any other people who are in a different family formation, so they ultimately feel forced to go down those routes. We are hearing from a lot of intended parents they are being told that, if they share their eggs they need to have a certain amount of eggs, so the donors are being over-stimulated. We are therefore seeing a huge number of lesbians and queer people in our community ending up with OHSS. They are sometimes not even going to the hospital, so it is not being registered. We recently had a family—close friends of ours—and one of them lost her tubes. Of course she had to use IVF to get pregnant anyway, but she has subsequently lost her tubes because she had such severe OHSS. The hospital said that it had further impacted her fertility and she would only be able to have IVF in the future, not IUI, which was something they wanted to do.

Did you say that only four out of 42 ICBs funded lesbian women’s IVF and that it was lower for trans women and other communities?

Trans and non-binary people currently do not get any fertility funding provision on the NHS. We have one family in Greater Manchester who have been successfully supported to get access. Others are disparate, saying that they do not fall within the category even with a gender recognition certificate. Gay men do not get support with embryo creation here; however, they do in Scotland and there are four families there that have had access. But at the moment it is only female same-sex couples, in four ICBs out of 42. Therefore obviously people are having to go private or down alternative, more dangerous routes like home insemination, where it is legally more precarious.

Do those 38 ICBs not fund any rounds of IVF for lesbian couples?

No.

Do you think we should be collecting data on LGBT people as a specific cohort? If so, why do we need to do that? Obviously some of those statistics clearly show that there is a potential for abuse.

At the moment the HFEA collects some sporadic data so we have information about female same-sex couples. We do not have information on single women and people in the community and not much on gay men who are looking for queer platonic co-parenting, unless they are a gay male couple. We also do not have support for polyamorous families or other queer platonic co-parenting: they are not in that data. There is a huge portion of the community that is not collected. I met with the Secretary of State this morning on maternity and neonatal care and again addressed the lack of data around our community. In America, the Association of American Medicine has data on our experiences and our poor outcomes, but actually in the UK we do not usually collect it and when we do it is really disparate and specifically only around female same-sex couples. We do not know what our outcomes are in fertility, mortality, birth, and physical and psychological injury.

Who do you think should be collecting that data?

The HFEA should be working directly with the NHS and they should be communicating and sharing that data so we can see what the outcomes are.

Diane, in the US students appear to be targeted for egg donation and we have heard similar reports in the UK. In your opinion, is such targeting ethical?

Any time you have a population that is potentially young and needing money that is then targeted with ads that say, “Be a donor and make $50,000,” it is undue inducement. There are some ethical challenges to that.

What is the minimum age limit for egg donation in countries that you have studied, and do you think it should be higher than 18?

Yes. It is 18 in both the US and Spain. As I mentioned earlier, I have one donor who was 16 when she first started looking into donation—with the permission of her stepmom, but not her biological mom—and I found the fact that the clinic would actually even take a 16-year-old surprising. From what I have seen with 18-year-olds to 22-year-olds, that is a bit young. I would prefer to see a bottom age limit of about 22 because then at least they are mostly out of college. Many of the egg donation agencies in the United States like to have donors that are in college, aged 18 to 22, because they have a more flexible schedule and can be more readily available to come for appointments and things like that. In my study the average age was 24 and a half at first donation, with an age range of 16 to about 30 or 31, as I said. The people who were over 30 in my study were all known donors, to people in their family or friends and so on, so they were not the compensated donors, who usually max out at about the age of 30. But 22 is a reasonable cut-off age for a first-time donor.

I went back to the team to say that was a typo: it was supposed to be three for both, so I had amended it. The fact is that when people go for implications counselling they are told that they are required to have one session, which is not enough; it does not cover the complexities of the difficulties that you may experience psychologically or physically, the considerations for any future donor-conceived child, what that future looks like when they will come knocking at the door, what that relationship may look like for you, what that may look like for them, and the recipient parents of that child. Three seems to be appropriate to start off with and three should be appropriately mandated. The first one is looking at the physical and psychological impact on you. The second one is talking through the legalities: when that child can reach out and what that looks like for you. The third one is discussing your fears, hopes, and considering the future of those donor-conceived children, taking real time to consider whether you are right to be an egg donor. Ultimately, that child or those future adults deserve the right to potentially reach out to you as their biological, other genetic parent. In the UK we have a right to information but not a right to contact. There really needs to be a true conversation around whether you are really willing to donate and have that responsibility, knowing that there may be a future open door that really should be appropriately opened.

Yes, 100%. I am all for egg donation and supporting families through that. I used a sperm donor to create my four children with my wife. But it is ultimately such a huge, life-changing decision that you have to be really committed. Independence is required. We work directly with expert Julianne Boutaleb at Parenthood in Mind who talks consistently about the complexities of egg donation and what that looks like, not just in the present but in the future, and how that impacts you not only now but psychologically later down the line. Intent can change; people do change their minds. There are women and people who have sperm donation using a known donor, for example, and later down the line we see support families where intent changes: he or they decide they do not want any other children, they want access to that child and to have parental responsibility or see the child. If intent changes at any given point, those conversations really need to be seriously considered, outside the clinical area, with someone wholly independent. Whether you are right to do it or not really needs to be considered.

Yes, and I would like to echo a lot of what she just said. What I find from a lot of the donors is that they are told throughout the counselling process that the egg is just a cell and it is not their child. They are counselled to separate themselves from the genetic material in order to go through the process. At the time most donors might say, “Okay, yes, the egg is just an egg, it is a piece of DNA, it is not my baby.” However, I do not think that that kind of counselling that has been reported to me here is necessarily going to prepare one for potentially having contact with the donor-conceived child or the recipient parents, at some point in the future. In fact, with the donors in my study, about 90% are open to being contacted at some point. Even in Spain, where anonymity is required, 75% or so donors were open to future contact. What happens in the US, and even what I witnessed in Spain, is that the counselling process is more of a process to get the donor through, accepted and moving forward with the donation, rather than really focusing on the potential long-term sequelae of becoming a donor—the contact, the relationships—and thinking about it in a more in-depth way. The idea of doing two to three counselling sessions to really ensure that donors understand what they are doing in a more serious way, rather than, “Oh, I am going to go and make £1,000”—or $10,000, or what have you—a more in-depth and more structured counselling would be advisable. From what I have seen here with the donors, they say, “Oh, wow, they told me it was just a cell when I first started out, but now I feel like I sold my child,” three years, five years down the road. As she said, those perceptions do change over time and that is not accounted for. I do not know what your counselling situations look like in the UK but I know it is not adequate in the US.

Laura-Rose, in respect of counselling we have heard in other sessions that there is some greater risk of having another woman’s egg implanted in you and obviously lesbian couples quite frequently choose to have each other’s children. Have you found that there is any specific counselling around that, and is that something that should be implemented?

It is something that should be implemented. Again, there are specific experts who can provide that additional level who are queer-specific and have worked with families to understand the idiosyncrasies and the needs of the community. It is very difficult to appreciate the gravitas of what reciprocal IVF looks like and the difficulties that queer women and people face when they undergo it. We hear from a lot of families when they are going through the pregnancy who tell us that the person who is the gestational carrier often feels like a surrogate and genetically far removed. We often then see the person who is the genetic mother or parent of the future children actually feel that they are far removed from the experience. Although they thought it would be a really lovely experience, it did not feel as they had expected. We also see a lot of families that do reciprocal IVF and find it a beautiful experience, saying it is perfect for them because they are both able to be part of that experience. It is wholly dependent on how people feel and what that looks like. Sometimes people cannot be a gestational carrier for a multitude of reasons, but they can donate their eggs, whereas the other person may not want to have a child because there is a genetic mutation or fertility issue, but they may be able to carry.

Moving on to commercialisation of the egg market. First Diane, what is your perspective on whether you have seen any evidence of exploitation in the egg donation industry? I am very interested in your thoughts specifically on the risks that you may or may not have seen in the UK, or things that we need to be aware of.

In the United States context I have seen advertising as high as $250,000 or even higher to become an egg donor. The interested person contacts the agency and then the agency says, “Oh well, sorry, that intended parent is already matched with somebody but we have another who is ready to match with you for $10,000.” I have seen a lot of bait-and-switch in the United States market; it is legal to advertise compensation here, which is what gets people in the door. In the UK I have not seen as much of the financial numbers out there in terms of what people can get. I assume people who are considering donation are pretty much aware of what the compensation is going to be, as they are in Spain. In Spain the maximum compensation is €1,100, €1,200 or so, which is equivalent to what a low-wage worker might make in a month, and in the Spanish context about 30% of the donors I interviewed or surveyed were immigrants, some of them recent immigrants; some of them were doing egg donation to help bring their family over from Colombia, and some were Ukrainian refugees, for example. Wherever you have that kind of population, they are potentially vulnerable. If you do not have high compensation then the compensation you offer will still potentially be enough to get people in the door, if it is enough to help with their monthly expenses. What was the other part of your question?

It was the focus on the UK and any watch-outs specifically in the UK, although you have touched on it.

I did touch on it; there were about 20 donors or so from the UK in my study. I have interviewed a number of them. Two of those donors actually left the UK and donated in the United States for $8,000, $10,000, $12,000 or $15,000 per cycle. One of them only did one cycle. Then a couple of the donors in the UK who had done egg sharing rather than just being a donor were concerned that they had had too many eggs taken and that it caused them to get OHSS. That can happen regardless of whether it is egg sharing or just a regular donation to an egg bank or something. I do not know the UK population demographics as well as I do the US and Spain in terms of who becomes a donor. But I personally have not seen much in the way of exploitation in the UK context, although I have seen things that could be considered to be exploitative in the US and in Spain.

We work globally, so we deal with a lot of families over in the US; I completely appreciate what Dr Diane is saying around the advertising, which is quite aggressive but also quite crude. You see social media posts saying, “Look at how many handbags you can buy, you can get $48k for your eggs.” It is really exploitative and aggressive. Over here egg donation is altruistic and you only get your expenses—which have gone up, of course—so people are doing it for the right reasons, which is totally appropriate. But as I mentioned with the psychological safety, the gravitas of giving someone something so crucial and important has to be taken into account. A lot of the difficulties in the UK are being dealt with in a more covert way within clinical groups. It is conversational, very verbal, and obviously looking at discounts and those conversations you have when you are starting at preconception around what your journey is going to look like. Advertising in the UK is not done in such a brash and aggressive way; I do not think that that would fly over here because it is not compensated.

Dr Diane, your international research suggests people travel across borders to both donate and buy eggs. What risks does this present and what measures are required to mitigate against those?

That is a tough question. In my study I had one donor from Los Angeles who travelled to Thailand to donate eggs to a couple from Spain, for example. In Thailand she ended up having extreme pain and bloating post donation when she was waking up from surgery. I actually have a video of her; she was screaming that she felt like she was being stabbed in the ovaries. This is the challenge of cross-border travel for providing eggs: there is a 22-year-old woman in Thailand who does not speak the language, who is having a medical crisis, and there is really nobody to adequately care for her in the global context and make sure she gets home safely. There have also been a number of reports of a black market in human eggs, with people being trafficked from Thailand to—where is it? Not Crete; my mind just went blank. There was a recent case where a number of donors and surrogates were travelling from Thailand to another country and it blew up a big trafficking ring for donor eggs and surrogacy. There is also the case that recently came out in Los Angeles with a couple running a surrogacy agency, with 20 surrogate-born children in their house. These kinds of things are remarkable in terms of international scandals and yet, from what I have seen, there is very little that can be done to stop these things from happening. There is such a lack of international collaboration on this process that it is very difficult to ensure an ethical approach across borders. It does not mean that these kinds of things happen all the time, but the fact that they happen at all is problematic. Another thing that happens quite a bit is the shipping of eggs globally, which has become more common with the rise of egg banks. As I mentioned in the written evidence, for the UK to receive donor eggs from abroad, you are not going to have the same ethical standards and the same standard of care that you might have in the UK in another location where they ship the eggs from.

Do you think that we should be looking to agree international limits on the number of eggs donated or families created, generally?

Absolutely. In the United States we say that you are supposed to stop at six cycles. That does not necessarily happen. As I said, I have a donor in my study who did as high as 19 cycles, and many who have done between 10 and 15. I have one “high-producing donor” in my study who donated eggs six times, producing about 50 eggs each time. She has just discovered through a person at the clinic that she now has 50 offspring throughout the world, which is quite a lot for an egg donor compared with a sperm donor. The challenge then is consanguinity: the idea that two donor-conceived people might not know they are donor-conceived—or might know but they do not know that their partner is—and they meet. This has actually happened in the United States. There was a story that came out a couple of years ago. It turned out that two high school sweethearts discovered years later that they were actually biological brother and sister, or at least half-brother and sister. Without tracking where the eggs are going and paying attention to the family limits there is an increased risk of these kinds of things happening. Interestingly, Spain has a law that says no more than six live births and no more than six cycles, whichever comes first. But what ends up happening in practice is that the clinics might interpret the law differently. While one clinic says, “No, six live births and she’s done”, another clinic might say, “Oh well, that just means six live births in Spain, but we can still ship the eggs to France, Italy, the UK and so on.” The more you increase the number of potential offspring from a single donor, the more you increase the likelihood of consanguinity occurring.

That is really fascinating and worrying. One of the concerns I have is that you could donate your eggs in good faith, for all the positive reasons, wanting to help families have children, but actually there is a concern that those eggs could go all over the world—and to who? Most women would want to know they are going to loving families. It brings in some risk, particularly if you discover you have 50 offspring. Laura-Rose, would you like to add anything?

I agree with Diane that there should be more global regulation and Governments should work together to look at what should be standardised and what should be mandated globally so that those limits are in place and actually adhered to. What does holding clinics and organisations to account if they break those laws look like, and how are they going to be prosecuted? I know the case that Dr Diane was talking about; that was an incredibly debilitating and awful experience for that woman and that man when they found out they were half-genetic siblings. I think that there needs to be more mandated regulation around it, but also there needs to be support and conversations around why it is wonderful to help families that need egg or sperm donation and what that looks like, and also more robust processes in place to support them through that experience. There also needs to be continuing psychological support, not just at those three appointments but thereafter. Egg donation is a wonderful thing but it needs to be more regulated globally and communication between countries needs to start happening now.

Thank you very much; that brings us nicely on to our next panel. Thank you very much, Laura-Rose and Diane, for your insightful testimony today. Witnesses: Dr Emily Dickerson, Dr Geetha Venkat and Dr Sarah Martins Da Silva.

Welcome back to our second panel. I am delighted to welcome Dr Emily Dickerson, consultant gynaecologist, fertility specialist and clinical lead for donation and surrogacy at Care Fertility and Dr Geetha Venkat, founder and medical director of Harley Street Egg Bank and Harley Street Fertility Clinic; and online we have Professor Sarah Martins Da Silva, professor in translational reproductive medicine, and honorary consultant gynaecologist at Ninewells Hospital and Medical School. Thank you very much. I am going to start with regulation. Sarah, are you satisfied with the current regulatory landscape in the UK for both egg donation and freezing?

You have heard from other speakers ahead of me that we should be very proud of the statutory structures we have in place in the HFEA in terms of the fertility sector. We are often looked at as exemplar examples by our international colleagues and we are generally good. However, there have been some discussions about perhaps introducing a lower age limit for egg donors and limiting the number of cycles. One thing that nobody has really touched on is the confidentiality issues that the Human Fertilisation and Embryology Act 2008 raises, in that it limits this joined-up approach to medical care complications, surveillance of long-term outcomes for donors, and so on. That is something we should perhaps pay attention and give consideration to.

Dr Geetha, are there any areas of improvement or changes that you would like to see?

I agree with Sarah. We can be proud of the UK’s HFEA licensing code of practice, consent framework and other things. The HFEA is a leader for the international community and other countries have followed the HFEA in creating their own regulations. However, there are still some areas that we can improve by establishing marketing standards and consistency of counselling with all the clinics. The HFEA says that counselling is necessary for all egg donors before they proceed with treatment, during treatment and even afterwards, but it is not mandatory. Some clinics and egg banks offer counselling as per the HFEA regulations but most donors say, “I know everything; I know all the implications.” As the senior person, I see all the donors in my clinic and egg bank. I have been in this sector for the last 30 years. If you ask a person whether they understand the full implication of counselling they say, “Oh, I know everything; I’ve done some research online and I know everything about egg donation and I would like to go ahead.” Some clinics then say, “Oh, we offered counselling. So-and-so does not want to go ahead.” In our clinic we make it mandatory before they commence egg donation. During treatment we ask them whether they still have any doubts and then we offer them counselling. During aftercare we offer counselling if they have any psychological effects or questions. There is no consistency with the different clinics. We should make it mandatory so that all donors understand the full implications of what they are getting into.

That is really fantastic; it is great that we are seen as one of the better countries when it comes to regulation on this, but it is always the job of this Committee to continue to push, because progress is not inevitable and sometimes, particularly when it comes to women’s healthcare, okay is not good enough. You talked about mandatory requirements on counselling. Is it mandatory for clinics to report the drugs and treatments that are given during their time under your care and, if so, who to?

It is mandatory for clinics to write down all the stimulation protocol used for donors, egg freezers and IVF patients, so we inform the regulator of the protocol we used.

We have heard in previous panels that there is a greater need for the HFEA and the NHS to share data so that they can see the long-term impacts, possible health implications, and to better understand the patient as a whole. Dr Emily, would there be any resistance to that and, if so, why?

From a clinic perspective, I don’t think there would be resistance to better data sharing between clinics and the NHS. It would protect patient safety, so I cannot see a reason why there would be resistance. Some historical reasons why there is not better data sharing are—as Professor Martins Da Silva mentioned—due to confidentiality and some things that were in place when the HFE Act was imposed, but better data sharing would be helpful. If you ask an individual clinic to track its donors in a better way, to try to get some of the longitudinal data that is lacking, then you are only going to select the donors from that clinic and only the donors who might engage with that kind of follow-up, which would not be standardised. We absolutely need better interaction between databases.

We had a bit of a conversation about minimum age earlier and I want to talk about maximum age on this. The HFEA guidance says that egg donors should be under 35 apart from in exceptional circumstances but around 15% of egg donors between 2011 and 2020 were over 36 years old—although in my head that is not old. Why is this?

Within our group, our limit for altruistic donation is 35, so up to the 36th birthday. Any people donating eggs beyond that age will potentially be in the known donation setting. Some people come to us for treatment having already considered someone that they would like to be an egg donor and that would count as one of those exceptional circumstances where you could assess. Those known donation circumstances are definitely assessed more stringently, if you like, than the altruistic donation in the sense that there is more counselling for the donor, the recipient and, in fact, together—that is the way that we approach it, because there are different implications beyond that. One of the main reasons why there is an age limit is to do with the fertility outcomes from the donated eggs. Depending on the age of the donor, there is quite a lot of discussion with the recipients, and the donor actually because obviously the donor needs to consent to the process about what the outcomes from the donation might be.

I do not know, but is there an age limit on sperm donors? What is the age limit for that?

It is 45.

It is 40 now; they have reduced it to 40.

On the lower age limit, we heard about possible moves from the 18 bracket to higher. Would it cause any issues in terms of donation if the age limit was raised?

One issue you will have heard about in the UK is a lack of people coming forward for donation, so there may be an issue there. Age limits are important, but it is also important to look at the autonomy, understanding and background of the particular donor. You cannot automatically say someone at the age of 18 or 19 could not potentially consent to that process.

Professor Martins Da Silva, could you explain how egg donation differs in Scotland compared with the rest of the UK and the reasons for this difference?

Healthcare across the UK is devolved, so we have funding for the NHS that comes from the Scottish Government. Ultimately, though, the law in the UK is not devolved and therefore all clinics in Scotland follow the same law that any clinic in England, Wales or Northern Ireland would follow. The difference is that we have slightly more joined-up thinking. Scotland is a big country, not as big as England and Wales, but there are only five clinics in the whole of our country that can see people for egg donation or egg recipient treatment. Four of those clinics are NHS clinics and one is a purely private clinic. The joined-up thinking that comes is that most of the clinics are funded by the Scottish Government and we have therefore come to an agreement. One categorical difference in Scotland is that donor expenses are not rewarded or repaid. We have a three-cycle limit so that people cannot donate more than three cycles of treatment, though you may have a donation that is split between more than one couple. We mandate that all donors must have counselling. If they are doing known donation, it is mandated that we should be counselling the donor, but also the donor and the recipient together, because they already know each other, to make sure that we set groundworks for potential complications or expectations for parenting or child involvement from the donor. If I am honest, I have been slightly surprised. I thought all clinics would not take people forward with donation without counselling; that has been quite a surprise and an eye-opener for me watching the previous sessions, but they are the main differences.

Do you think donor recruitment is more difficult in Scotland without the compensation?

It is difficult. I was trying to find data and I do not know whether I can give you any data that would tell you, but as a practising clinician it feels harder to recruit people to be egg and sperm donors. As I say, we are a big country and there are only a few clinics where you can donate. Cost of living is a factor. We expect people to travel a long distance to be seen. They often have young families of their own and have to make childcare arrangements and so on. The compensatory part of it is probably the most controversial. Clearly, we do what we are instructed to do, but on a personal level I do not think it is fair not to compensate for expenses that potential donors encounter.

Do you think it is having an impact on waiting times for people accessing treatment?

Yes. It is not fair for anybody to have to wait, but unfortunately that is the reality of NHS care, whatever specialty you work in. Certainly the time people are waiting for donated eggs is something like 18 to 24 months at the moment. It is a long time for people who need some assistance to be able to achieve their family to be sat on a waiting list just because we do not have any donor eggs to give them.

Is it an area where we need more harmonisation of the regulations across the UK?

I guess so. It is difficult, isn’t it? There is a lot that the Scottish Government do very well. We are very lucky to have all the funding that is recommended in the NICE guidelines. Potentially I would bat back to the rest of the nation that people who need fertility treatment should be funded effectively according to clinical guidelines.

Dr Venkat, how do you record and report complications during donor cycles or egg freezing? Do you know how many of your patients present to A&E with complications following egg collection?

We follow our donors very carefully. I actually run the egg donation programme in my clinic and for the egg bank; I take a personal interest. It is important to offer physical, psychological and emotional support. Two days—48 hours—after the egg collection procedure we bring them in for an ultrasound scan and a chat with the nurse. This is a general check-up to make sure they are okay physically and mentally. They have a chat with the nurses and if there is any sign of hyperstimulation we do the necessary blood test. If they have any symptoms such as vomiting, nausea or pain we give them appropriate medication. Some are not able to eat or drink because of the nausea, so we give them intravenous fluids. We do proper aftercare. If we think they need further monitoring we bring them back for another scan and a chat with the nurse. If necessary, a doctor will get involved if somebody has hyperstimulation or early symptoms. I am not talking about critical OHSS hyperstimulation, because then they will need to go to the hospital as an inpatient. We manage all patients with mild or moderate OHSS. Even if they do not have OHSS, we bring donors back to our clinic for a check-up scan and a chat with the nurse to make sure they are all right. Subsequently, all donors come and have a scan four to six weeks after the egg collection procedure to make sure everything has gone back to normal. We check everything, and they also have a chat with me; I discuss with them how they feel about it and how the experience was. As the donors are usually around the age of 30 to 32, I also say, “Look, I know you came and donated because you don’t want a child at this moment in your life, but don’t forget that later on you may not be able to have a child.” I just have a chat with them about the importance of thinking about themselves and doing something about it. I had an egg donor who donated four times in our clinic. The second, third and fourth time I told her and she said, “Yes, I will be all right, I will be all right.” She came back to our clinic at the age of 43 and said, “Oh, can you check my ovarian reserve?”. Unfortunately, she had no eggs and I had to disclose this information to her. I had tears in my eyes because as a young girl she helped so many people but, finally, she could not have children herself. She told me, “You always asked me to think about myself and my fertility but I didn’t do it.” I always have a chat with—

Dr Venkat, can I just pull you back briefly? It has been really useful but the specific of the question is: how do you record and report complications? It is good to hear how you discover complications but how do you record and report those once you discover them? How many of your patients would you say present to A&E?

We are talking about two groups: egg donors and egg freezers. Egg freezers are usually freezing for social reasons or to preserve future fertility. Most of them have a low ovarian reserve, so the risk of OHSS or complication is very low in such a group. However, with egg donors the risk of OHSS is there. We say, “If you have any complication and need to go to A&E or a hospital, please inform us immediately.” We have an on-call phone so they call the doctor immediately and say, “I am in the hospital.” If somebody has been admitted to hospital, we report it as an adverse incident in our clinic and we discuss it in our meetings. We also have to inform the HFEA within a limited timeframe, so we do that as well; we are in control of the situation. We follow the patients to find out how long they have been in the hospital and what happened. Was it a real diagnosis of OHSS? Sometimes it is not real OHSS. Patients have pain and are discharged within a few hours saying, “Oh, they gave me this painkiller; I got better.”—so it was not real OHSS. We inform the HFEA of any hospital admission. We collect information from all the patients because we also see them after four weeks and if they have been to the hospital in between we are able to collect the data. We do not miss any admissions to hospital or adverse events from the donors.

Dr Dickerson, is the process similar at your clinic?

It is quite similar. I work across quite a large group of clinics. We have the internal Datix reporting system, so any donor complication or perceived complication will be reported through that system and investigated through the structured internal policy. We report and internally investigate anything that occurs. Obviously, the HFEA stipulates which ones we need to report to it. This comes back a little to the connection between the NHS and private clinics. If someone attends A&E their GP is alerted, but that is not the case for the private clinics and that might be helpful. The reason it is not necessarily a massive problem is that we have really good continuity of care for our donors. They know that we are their first port of call so they will often contact us first. If we think they need to go to A&E because it is a complication that needs more immediate care, we will signpost them that way and then follow them up appropriately. We also capture them a couple of weeks after the donation. I do not think we will particularly miss them, but it could be improved if we had more of an alert system.

Do you have any data on what percentage of your patients report to A&E?

For this inquiry we had a look at egg donors—not freezing; I do not have that data—over the last 12 months and none of them went to A&E.

If a patient reports to A&E, do you think egg clinics should refund the NHS for that treatment?

That is quite a complicated question and would probably speak to a broader conversation between the NHS and private healthcare across the UK rather than just egg donation. The published data and the evidence we have point towards a low number of complications for egg donors and people freezing their eggs, and actually across IVF treatment as a whole. We are not looking at an undue burden on the NHS for these patients. Whether there should be a cross-charge I do not know; that is probably part of a bigger conversation. If you look at how the fertility sector has responded to potential burdens on the NHS, you have the multiple birth minimisation strategy that was moving towards reducing multiple pregnancies, which was mainly to reduce complications for the mum and the baby but also took into account the burden on the NHS from that. There was a response in that sense, but whether it should be financial is beyond my comment.

Professor Martins Da Silva, coming from an NHS background, what is your view on that question?

Oh, that’s mean! The NHS should be there to help anybody at the point of contact without financial burden. It is not the patient’s fault that she has developed side effects and so on, so I would say probably not. I guess you are asking if there is unscrupulous practice in private medicine that is burdening the NHS with problems and—as Emily would say—I do not think there is a huge problem here in terms of the topic. We also looked through complications for our donors and, again, have had no A&E admissions. Actually, they do not go to A&E; they contact the clinic directly, probably a bit like the egg bank.

You have already answered this slightly, Dr Venkat. Dr Dickerson, what aftercare do you provide patients following egg donation or freezing?

The aftercare starts before the donation. We have a great team across all of our clinics that looks after people donating their eggs from the beginning. It offers continuity of care and information provision and establishes a pretty good relationship during the assessment phase as the person is deciding whether to go through with it. The individual clinic will take care of the donor for the specific treatment when they donate the eggs. If there are any immediate complications with, say, the egg retrieval or concerns about ovarian hyperstimulation syndrome then that clinic team will look after them and let the wider donation team know as well. All donors are followed up with a phone call from the donation team—people they have an established relationship with—a couple of weeks after the donation. Beyond that we do not formally follow them up and, if we should, it would be hard to say whether that should be six weeks or six months. It would be really difficult to know whether people who had donated would want that. We have a proportion of people who seek to come through to repeat a donation, which is obviously a different group, but we do capture that immediate post care. Donors can communicate with us quite easily and they often do. We have easy messaging systems where they can contact the team and we see them coming through if they need to.

Dr Venkat, you talked about counselling earlier and the fact that your clinic offers counselling. The HFEA has recommended that it should be mandatory for all donors and recipients to have implications counselling prior to donation and not just for counselling to be offered by clinics. Are you supportive of that recommendation?

Yes, I believe in that. There is a lot to understand in egg donation because this young 20-year-old girl who is studying in a university may not understand the full implications. She has probably consulted Dr Google and says, “Look, I know a few things,” but does she understand how she will feel when she meets the child after 20 years? How will her family feel? It is important for them to go through the details, the implications, and the risks involved in the treatment so that she makes an informed decision to go ahead with the donation. I fully support that.

Geetha, you talked about reporting to the HFEA following A&E admissions. Do any of your three clinics report to the HFEA only if there has been a hospital admission, or do you report complications where you have dealt with them in your clinics?

Yes, if there are any other complications—sometimes they are due to anaesthesia or from the procedure, such as bleeding. We have an internal incident reporting system for adverse events following any treatment or procedure and we report to the HFEA.

Does that include mild to moderate adverse reactions?

Yes, it does. It is one of the internal clinical governance systems in our clinic, and we report whichever cases are important according to the HFEA guidelines—the cases they want us to report.

Including the mild to moderate ones. Is that the same for you, Emily?

We report to the HFEA as per what data it wants us to report. That would not include mild to moderate. I would say that incident reporting should be viewed as a positive; we need to share that within any responsible healthcare organisation and then to the HFEA. A number of incidents are reported to the HFEA that it then records as not an incident. It only really wants specific incidents reported and we follow that. We would not report mild OHSS to the HFEA.

We would not either. We report critical and severe, which has to be reported within 25 working days. If there is any other unexpected incident, hospital admission, pain, or whatever, then we would report that. That has to be reported within 24 working hours, so usually a day or two. We record mild to moderate ovarian hyperstimulation in-house. We monitor everybody in all our data in all kinds of different ways but we would not report that to the regulator.

Is it just OHSS that you would report, or is it also bleeding on egg collection and other complications?

Yes, any sort of adverse incident—bleeding, infection, sepsis, unexpected hospital admission and so on—would be reported not only to the HFEA but also internally within NHS systems. Specifically, OHSS has a different reporting form to go to the HFEA and it is only for critical and severe.

I would just like to ask a few questions about how you tell users about your services and how you advertise what you are doing. Emily, how does your clinic present its success rate for egg freezing?

I had a look at this before coming today. There are some promotional ads out there potentially raising awareness about egg freezing but they do not include anything related to success rates. If you click on from those you will then get to the relevant page on the website, which references how we might discuss success rates. I had a look at that as well and I think it is pretty fair. I don’t think it over-sells success rates of egg freezing. There is quite a lot of information about why people might want to egg freeze and what the process might look like. In the section that talks about success rates, it acknowledges the HFEA data and then suggests to look first at egg thaw rates, because that is relevant to success from frozen eggs. At the minute, people are freezing their eggs but we do not have a lot of experience with people coming through and using the eggs, even across a group, so you should really look at it per clinic because it is based on the expertise of a particular lab. The best way to look at success rates is to look at success rates using fresh eggs for your relevant age groups. That is on the website. From our group, I cannot see over-selling of success from egg freezing.

Are there barriers in the processes you have or are innate to anything clinically that maybe stop things from being as transparent as people would expect in any service that they use? Are there things that you cannot measure, or things that stop you from being as transparent as you would maybe like to be?

We have to acknowledge that, as I was saying before, the number of people freezing their eggs is much higher than the number of people coming through to use those eggs. People freezing their eggs electively are a different group of people from those coming through for fertility treatment, which somewhat limits that direct comparison; it merely reflects what the expertise in the lab may be. There is uncertainty because we do not have enough data to really counsel people specifically about their individual success rate.

Geetha, we have heard reports that egg donation is being advertised at university freshers fairs. What is your take on that, particularly the ethics around that sort of approach?

It is a difficult thing to say because we have to get the balance right. We have a shortage of egg donors in the UK and we know a lot of couples are travelling overseas—to Spain, Cyprus and other places—for donor eggs because of the shortage. It will be more convenient for them to have the treatment here if it is possible. At the same time, yes, these are vulnerable people and some might be doing it for money without understanding the full implications. However, we cannot generalise the statement; we have to make sure that they understand the full implications. That is where the counselling with the consultants as well as the fully-accredited fertility counsellors who are independent of the clinic comes in. We have a counsellor working with us, but she is not part of the clinic; she is independent. She also does counselling for two more clinics. That kind of good-quality counselling is important so that they understand all the procedures, the risks involved and the full implication of a child being born who can contact her at the age of 18. Each person’s maturity is different. It would be better if we were able to advertise but not target only that group, but each clinic has its own policy and there is no uniformity in this matter. That is why it is difficult to comment on it—but we should get the balance right.

If each clinic is different, how widespread do you think the practice of going into university freshers weeks and advertising is?

We have not done it. We have an egg bank, but we do not advertise like that. I know some clinics are doing it, but we do not. In fact, we do not openly advertise for egg donors because some of our egg donors bring other donors by word of mouth. We also have egg share donors, or if it is a known donation they bring their family members, sister, cousin or somebody. We do not advertise for donors because it is better that they hear about the clinic from our website and then come.

Dr Venkat, could you tell us how an egg bank differs from a fertility clinic?

Fertility clinics offer treatments to couples. They offer all the fertility treatments from A to Z, such as IUI, IVF, egg donation, surrogacy and so on. They are interested in treating the patients. Egg banks are independent organisations or units where they recruit and screen the donors, arrange the egg collection procedure, and then provide aftercare for donors. They give these eggs to the recipients who are looking for donor eggs. Some egg banks that have lots of donor eggs sell them to other clinics and other patients. Our egg bank is a small one. We do not sell to anybody else and we do not import from overseas. Our egg bank is only for our patients’ use. That is how we function. We cater to our patients’ needs whereas the other egg banks are commercial units that are totally different.

If you had surplus eggs from UK donors and you exported them internationally, would you have to get the donors’ consent to do that?

Absolutely. Donors have a right to know what is happening to their eggs; we cannot do it behind their backs. It should be explained properly and we should take a separate consent for moving the eggs to other countries.

Is that a legal requirement or is that your opinion?

It is my opinion. At present there is no regulation on that. In fact, we do not have any regulation on whether the eggs can be moved from one clinic to another. We always give the opportunity for the donors to say no. If somebody wants to move the eggs or embryos created from the eggs that is a possibility but it is within the UK because all the clinics are regulated by the HFEA, so we are allowed to do that whereas overseas there is no regulation as far as I know.

Where do your donors come from? Do they all come from the UK or are some international?

The donors are UK only. We do not have international donors because we cannot afford to pay the HFEA compensation to overseas donors. We do not have overseas donors; they are all from the UK, nearby, around London.

Do you know clinics where they source eggs internationally? Are there some clinics in the UK that source eggs from other countries?

Yes, they actually import eggs from the USA, Ukraine and so many other countries. They buy eggs in bulk and they sell them here.

Do you know what due diligence is done by those clinics? What do they have to do ethically in terms of recruitment of the donors and the standards? Is there a legal framework around that?

It would be UK-compliant. Whatever the HFEA says regarding donor recruitment, screening and compensation offered, it should all be UK-compliant so that they go through all these things with the other countries to ask how they recruit the donor, how much compensation is paid, whether they have counselling and all the screenings according to our regulation. They check all that.

Professor Martins Da Silva, I could see you nodding along there, so I guess you agree with what has just been said. Are checks done on the number of families already created using eggs from the donor if those eggs are imported?

We do not import eggs internationally and we also have a rule in our clinic that for any donors we recruit we would not allow their eggs or sperm to be exported internationally, unless it was a couple who had already had treatment, who had a child and perhaps moved to, for example, France and wanted to take embryos, eggs or sperm for further treatment with the same donor. We do not have that concept of imports and exports of donor eggs. The thing I was nodding along to was that whatever country or jurisdiction the egg donor has donated in has to match the UK statutory framework. In Spain, for example, there is anonymity. You cannot ever find out who that donor would be, which our law does not allow. Our laws allow that when donor-conceived children reach the age of 18 they can potentially find contact details or even contact the donor. When we apply for a certificate from HFEA we would not be allowed to import those eggs from Spain if they were from an anonymised donor, for example. It was just to clarify that that matches up with what happens overseas, but we do not import eggs.

We are going to talk a little about costs. Dr Dickerson, for egg freezing, do your clinics present full costings, including the add-ons and the ongoing storage fees, before a patient commits? Do you do that upfront?

We would certainly do that before a patient commits. Again, I have had a look through. We have actually done quite a lot of work to make the costings on the website transparent before someone approaches us, makes appointments or arranges any investigations. Obviously people in the UK are generally not used to paying for their own healthcare or treatment so it can be really difficult to navigate. Fertility treatment is quite complex as well in terms of what treatments are offered. There has been quite a lot of work trying to make it clear, as per which of our clinics you come to, what the costing might be. It is slightly separated into consultation cost, pre-treatment tests, screening, infection screening, the treatment cost—and, just to make the point, all are offered counselling. The storage cost is then referenced and there is a separate medication cost. Once the consultation has been had with the doctor, a full itemised cost will be sent through, including the cost of medication for that particular person because it would depend on the results and so on. I do not think there are really any add-ons in terms of egg freezing. The things to consider are ongoing storage costs, and whether or not you need or want to consider another cycle of egg donation because things such as viral screening might have to be repeated. There should be a discussion around what your potential treatment costs might look like down the line; you cannot really itemise that fully because if it is 10 years down the line no one will be able to, but a reference should be made towards that.

Is there any evidence that people withdraw from the treatment once they have seen the full cost?

I do not think we would have that data. We look at what we call conversion to treatment, so we look at people coming through and then look at the people who do not go to treatment. For people who are looking to freeze their eggs, I am not sure we would know specifically whether they did not go ahead, because of the cost because some may not go ahead for other reasons. They may decide to get pregnant instead; they may not want to freeze eggs, because the results of the fertility checks were not as they had hoped. There are lots of different reasons for that. Obviously, if we thought the prices were not set right and people were not coming through, we would adjust that. There is potential work to be done on that as well.

That is really helpful; thank you. Professor Martins Da Silva, in your clinic’s view, how does egg sharing differ from financial compensation for egg donation, given that it provides substantial financial benefits?

It is a good question and, if I am honest, it is a concept I do not feel particularly comfortable with, because egg sharing is generally offered in return for a reduction in the patient’s cost of treatment. It is those who are paying for treatment—which is a small proportion of the overall population of people we see in our clinic in Dundee. The issue is that we have quite good data from the HFEA which shows that the chance of your own IVF treatment working is numbers-dependent. Within reason, the more eggs you get the better. If you are talking to somebody about halving the number of eggs, you may not halve the chance of treatment success, but you certainly will diminish it, or you run the risk of stimulating them very hard so they get lots and lots of eggs and therefore run into problems with side effects, hyperstimulation and all the things that we have already discussed. As a clinic, we do not offer it. Ethically, I find it quite difficult to have that conversation with somebody to say that you are going to reduce the treatment cost by £1,000 but, actually, you might not get enough eggs to share. I do not know; it is a very difficult one—this is a personal opinion, but the way—but it does not feel like a very fair approach for those who cannot afford the fertility treatment to incentivise them to go into something by sharing their eggs and being a donor and reducing the chances of their own treatment success. I do not think that conversation is open and transparent enough to those who are pitched that idea.

Does your clinic offer egg sharing?

No.

Do either of your clinics offer egg sharing?

We offer egg sharing.

What safeguards do you have in place to make sure that egg sharing does not function as a financial inducement?

First, we counsel them about what is involved in the process and what discount they get from the free IVF treatment. We follow the HFEA regulations. We do not overstimulate them just because they have to produce more eggs because they are donors as well. We have to keep that in mind. According to their ovarian reserve, we give whatever dose is needed as per standard management. Sometimes in egg sharing, the ovarian reserve—as shown by the ultrasound scan and blood test with regard to anti-Müllerian hormone—is good and we recruit them as donors, but sometimes they do not produce as many eggs as we would have expected. We counsel from the beginning about what will happen if they do not produce enough eggs and what options they have. There are two sides to this; we offer them a lot of compensation in this case. Compared with the £985 offered to altruistic donors, we offer £5,000 towards the cost of IVF. At the same time, some patients have been refused IVF by the NHS—I am not criticising the NHS—because of a lack of funds. Some health authorities do not offer it and when they cannot offer as much money as the private sector, this is an opportunity for them to have IVF. That is the good side of the story, but of course the other side is egg sharing. Do they understand? Are they doing it just to get free IVF? That is also there; that is both sides. We make sure they are counselled properly many times and ask relevant questions to make sure they understand the full implications. We give them time to think about it. We do not start egg-sharing treatment in the same month. We give them two or three months to consider everything and only then do we go ahead.

Dr Dickerson, does your clinic do egg sharing?

Not at the moment, no. To be frank, we are wondering about it, because we used to do it—I am talking pre-2020. We are thinking about it because we do not have enough donors, so we are wondering how we might introduce that, but at the moment we do not. I could not really comment on that at the moment.

That is fine; thank you. Private equity is increasingly interested in the fertility sector. What do you think makes this sector so attractive to private equity investment? Are there any signs of costs being inflated to pressure people into egg sharing? Is this an area of concern for you?

I am obviously not a business person, so I cannot comment too much about private equity, but it is a growth area so private equity will be interested in that. We are a large group of clinics; there is opportunity to grow clinic groups, which is possibly another reason. Obviously, we are slightly unique in the UK partly due to lack of public funding for fertility treatment, which is a problem. I know it is not the reason for this, but potentially there is inequality across the UK. I am not sure about the inflation of costs. I do not want to stray into business, but if there are different groups owning different clinics then the market sets itself, does it not? I do not think there is necessarily inflation of costs because of ownership by private equity groups.

Dr Venkat, do you want to add anything in terms of private equity?

People think there is a lot of money to be made in the IVF sector. That is why I think there is interest from the venture capitalists and equity groups. As long as they maintain transparency around patient care it is not a problem, because it should not be profit-driven. In the private sector there are two types of clinics. My clinic is a small clinic that I set up; it is not profit-driven. It is more concentrated. We focus on patient care, a good success rate and so on. For large clinics it is different. They are usually profit-driven but, as long as they manage the patients well, there is transparency, clinical governance and all the processes are in place, there is nothing wrong with that.

Professor Martins Da Silva might actually have covered this. I do not ask this question with any judgment or in any pejorative way, but when we were talking about egg sharing you mentioned that you were ethically uncomfortable with it because it might incentivise people to share eggs in order to be able to afford IVF. Would that not be precluded in Scotland if no compensation is allowed? Could the IVF not be seen as compensation and be precluded?

There are NHS clinics in Scotland that offer egg sharing and, because it is a reduction in the cost for treatment and not a financial payment, it is not perceived in the same way. Clearly both are—for the good or better—some sort of compensation to the person donating. Maybe the other get-out clause is that we are not quite so beholden to the NHS in Scotland because people are paying for treatment and it is perceived slightly differently. I do not know whether that is true or not, but it feels to me like there are two slightly different populations.

Sarah, research has shown that the risk of severe OHSS increased with the number of trigger shots and the number of eggs produced. What can clinics do to control or mitigate that level of risk, particularly with patient to patient?

Ultimately, we are all clinicians looking after these patients in clinics and we want the very best for them. If you have somebody who has a successful and uneventful egg donation journey, they may well come back and donate again, which is a good thing. We have safer protocols. We use gentler protocols using antagonists, and we tend to only trigger with one—an agonist trigger generally—so that you are not exposing so much of that risk. We use AMH, an antral follicle count, and various predictors of how somebody is going to respond. However, they are only predictive tools and the issue is that there is a huge biological variability. You could have three women in their mid-20s who might respond very differently despite the fact that their numbers on paper look very similar. We do what we can to mitigate that risk. It is not in any clinic’s or any clinician’s interest to have somebody with side effects and unwell, and certainly that is where I sit. It is very much wanting to keep people safe and that is the main thing we do.

This brings this session to a close. Thank you, Emily, Geetha and Sarah, for sharing your expertise and experience with us today.