The latest event organised by the Progress Educational Trust (PET), the charity which publishes BioNews, explored what happens to unused embryos after patients have completed their fertility treatment.
Presented in partnership with the Scottish Government, the event, 'Donate, Destroy or Delay? When IVF Embryos Are No Longer Needed for Treatment', was focused on an important topic that normally doesn't receive enough public discussion.
Donate to others.
Donate for research.
Donate for training.
Consent to perish.
Delay or avoid the decision.
The first expert, Joanne Leitch, lead clinical embryologist and laboratory manager at Glasgow Royal Infirmary, gave an overview from a clinical perspective. She explained how it was usually the embryologist's role to discuss the options with patients prior to commencing treatment and giving their consent. The embryologist also follows up with the patients at the end of their treatment when there are gametes or embryos in storage.
TheHuman Fertilisation and Embryology Act 1990which was amended in 2008, governs the use and storage of gametes and embryos. Remarkably, between 2013-2018, embryo storage cycles have increased by 700 percent, and egg storage cycles have increased by 240 percent. According to Leitch this increase is due to an improvement in culture systems and techniques, clinical outcomes and vitrification and warming methods. The permitted storage period differs depending on the storage purpose. For some, it is up to ten years, but for fertility preservation or for treatment for 'premature infertility' it can be up to 55 years. I find it hard to understand why there is such a difference in storage times – surely all patients embarking on an IVF journey are trying to preserve their fertility so that they are able to have a family using their own gametes?
Fertility centres must offer counselling to patients embarking on fertility treatment, not only for the treatment itself but also when deciding what happens to their embryos when treatment has ended. It became clear to me through the event, how important the role of a fertility councillor actually is, and I would very much have liked to have heard the expert view of such a counsellor as part of this event.
Leitch went into more depth on the options introduced by Norcross – highlighting the overwhelming amount of information that, by law, needs to be discussed. With the focus on 'having a baby', I don't think I, personally, would give discussions on what to do with surplus embryos the magnitude they deserve, probably not foreseeing the decision that may lie ahead. Strikingly, Leitch reported that 70-75 percent of embryos and gametes are destroyed at the end of the storage limits.
Next, Norcross introduced the second expert, Kate Brian, a representative from Fertility Network UK, who focused on embryos and what they mean to patients. Brian admitted that, as a parent through IVF, she first saw her children as embryos and explained how, to her, an embryo is more than a mass of cells, but a potential child. Through her use of personal accounts from former patients I learnt of the guilt, anxiety and sadness some feel when making a decision about discarding embryos. It appears that many patients feel it easier to ignore the letters, avoid the decision – Brian explained that this is so common it is termed 'embryo abandonment'.
The third speaker, Laura Riley, head of policy at the Human Fertilisation and Embryology Authority (HFEA), gave her expertise from a regulatory perspective. Here we learnt in greater depth how the HFE Act regulates the donation and storage of embryos. I was surprised to learn that patients who decide to donate embryos to a patient undergoing fertility treatment were able to find out how many children were born, their gender and when they were born – and could only foresee patients who were successful in their own fertility treatment considering this as an option.
One option patients have that resonated most with me, as a former research scientist, was 'donating to science', which should be a really positive option both advancing medical research and helping other fertility patients. Riley explained that only one in five clinics have arrangements to recruit embryos for research, and that there are relatively few research projects ongoing, with only 21 listed at the moment. To make the situation even harder, patients have to donate embryos to a specific project and can't donate to research in general, even though according to Riley'70 percent of patients said they would donate in a system of generic consent'. I was pleased to hear that the HFEA is undertaking a project to help smooth the pathway of donation for research purposes, and has produced a pamphlet to advise patients on what the options are for their remaining embryos.
The final speaker, Professor Adèle Marston, cell biologist at the University of Edinburgh, gave a research perspective. I was delighted to hear from a research scientist, who clearly explained the molecular biology behind her embryo research project into the molecular origins that lead to errors in eggs and embryos. For Professor Marston's research fresh embryos are used, but only ones that are unsuitable for use in IVF treatment or freezing for later attempts because they are not developing properly and would not result in a viable pregnancy. It was clear how vital embryos are to conducting her research and again made me wonder why it isn't easier for embryos like these to be put towards important scientific research.
Norcross finally invited back all four speakers for the Q&A session. Overall there were 45 questions submitted, with Norcross choosing the most popular to put forward to the experts. The Q&A part is where the virtual nature of PET events come into their own. At any point during the event anyone is able to write their question, directed at a particular speaker, and submit it to the host. The most appealing part, to me, is that questions can be asked anonymously, so there is no need to be shy or unsure whether to ask your question.
The question: why are patients not allowed to take their unused embryos home to perish?, was directed to Riley. She explained that this was a legal restriction and not something that was imposed by the HFEA. Fetal tissue can be arranged to be taken home after an abortion, so why shouldn't it be allowed for embryos if the patient wishes? Embryologist, Leitch, did conclude that even though it wasn't an unreasonable request, it had only been asked in her clinic on very few occasions.
A further question brought to light, that in the US and New Zealand fertility patients are able to donate their embryos to a known couple, allowing them to keep in touch with each other – and their genetic child. Brian added that not knowing who the embryo was going to was a barrier to most patients interested in donation – but due to the legal situation in the UK it wouldn't be easy to implement.
One question that appeared to resonate with all speakers is the terminology used, with even the title of the event being brought into question. Should we be using words like 'destroy' or even 'perish' when discussing the termination of embryos. The participants could not agree on a more suitable terminology, with some preferring direct language and others softer language, showing how much fertility patient views vary.
It was Brian's words that stayed with me most: 'the only way we will be able to help patients make informed choices is to talk to them'. The event highlighted that the choices surrounding embryo storage are complex and that, working with patients, changes are needed to help patients be informed, less overwhelmed and more confident in the decisions that they need to make. To me, this event, has lit the first spark in this process.
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PET is grateful to the Scottish Government for supporting this event.
Register now for the Progress Educational Trust's upcoming public events, all of which will be held online.
Lessons from Lockdown: How to Improve Support for Fertility Patients
5pm-6.30pm (GMT), Thursday 5 November 2020
Find out more here, and register for your free place here.
Fertility, Genomics and COVID-19
9.15am-5.30pm (GMT), Wednesday 9 December 2020
Find out more here, and register here.
Note that there is an early-bird discount on the standard attendance fee, if you register before 31 October.