The annual conference of the Progress Educational Trust (PET), ‘Make Do or Amend: Should We Update UK Fertility and Embryo Law?’ could not have been more timely. Held at the beginning of December, it shortly followed emerging reports from China that the first gene-edited babies will soon be born. While attendees did not miss the opportunity to discuss these developments, the conference provided food for thought for anyone interested in the legal aspects of fertility and reproduction.
The general sense in the room was that the law can hardly keep up with technological developments in this area. As many speakers brilliantly argued, this can lead to problems and frustrations when trying to apply old laws to current contexts. Professor Emily Jackson underlined the issues faced by UK patients as a result of the 10 year legal limit on embryo storage, while Dr Kylie Baldwin highlighted similar issues experienced by women undergoing egg freezing for social reasons. Additionally, the law can be especially restrictive for families who conceive through donation and surrogacy. Both Natalie Gamble and Natalie Smith did an excellent job of underlining changing family practices.
I was especially struck by the diversity that exists within European fertility law. Oftentimes, regulations cannot be separated from the ethical and religious context of their respective countries. This was especially evident in Professor Robert Spaczyński’s presentation on reproductive laws in Poland and Professor Christian de Geyter’s overview of assisted conception in Switzerland. Giving attendees a fascinating picture of the larger European landscape, Satu Rautakallio-Hokkanen, the Chair of Fertility Europe, walked us through many differences between legal restrictions in assisted conception and services offered in various countries across the continent.
For me, a crucial question emerged during the discussion: why is this area of medical practice as regulated as it is? Some have argued that we are talking about procedures that should not even be within the purview of the law. Others might think that we just need better laws, instead of getting rid of them altogether. It is clear, however, that for the time being, fertility and embryo law remains contentious. Consequently, we need to have these debates and conversations in order to find the best solutions. PET’s event made me reflect on bigger questions than the ones I had going in. I had no doubt that better regulations are needed. Now, I wonder, however, about legal systems’ inherent limitations and whether such institutions have the adequate means to cope with rapid changes. Should certain procedures remain unregulated? I have not yet decided on my definitive views, but I’m glad these conversations are happening.
For the last couple of years, the research team has attended the annual Fertility Show in London. Now in its tenth year of existence, the Fertility Show has emerged as a key event for people who are interested in learning more about family making, infertility and the world of fertility treatment. This year, which also marks the 40th anniversary of IVF, the show hosted over 100 exhibitors from the UK and beyond, over 50 seminars, and thousands of visitors over the course of the weekend. All sorts of exhibitors were present; ranging from clinicians, doctors and practitioners who specialise in all aspects of reproductive health and medicine, advice groups, trusts and charities, financial and legal consultants, lifestyle and nutrition advisors, holistic therapists, acupuncturists, and many more.
For the research team, being at the Fertility Show is a chance to learn about technological innovations that are taking place in the world of IVF as well as how these are presented to people who are considering this type of fertility procedure. In other words, the show offers an insight into how professionals communicate their expertise to the non-expert ‘general public’, which can tell us something important about how science and technology ‘operate’ in the world. In practice, we divided ourselves across the two days to attend seminars, explore the stands, talk to fertility professionals and collect written material, such as flyers and information booklets, to add to our growing archive.
While the quantity of printed material can be overwhelming, as a collection it tells us a lot about how the possibilities and technologies of conception are dynamic and continuously evolving. Of special interest to me is how imagery and visual aids are used to communicate information. This includes medical illustrations, diagrams, charts, ultrasound imagery and product images, as well as all the other photographs that are used to frame information in very particular (and sometimes quite peculiar) ways. The most obvious observation with regards to the latter is the proliferation of pregnancy images, which often focus on the ‘baby bump’, and pictures of the wished-for child. Broadening out we might think about how this visual material presents male and female reproductive bodies differently or about the assumptions that are made about what constitutes a ‘family’ in this context.
Talking to people at the show is also an opportunity to tell them about our research, which often involves challenging ourselves to effectively explain the value of social science in an otherwise heavily medicalised field. This is not an unfamiliar contention for researchers who employ qualitative methods, such as interviews, visual analysis and ethnographic observation, as opposed to research methods that are associated with the ‘hard sciences’, which often involve quantification.
Needless to say, medical and scientific research is absolutely fundamental to the advancement of effective and safe fertility treatment. But as social scientists we are equipped with tools that allow us to offer differently nuanced pictures of the everyday practices through which scientific knowledge is made, and how these processes of knowledge production and translation are regularly tied up with social, cultural, relational and emotional dimensions of lived experience that are rooted in particular contexts. This kind of insight is particularly important as new technologies are introduced and negotiated by both IVF professionals and patients – what do these technologies mean to people and how are they made sense of?
In addition to exploring and learning at this year’s show, being in this environment provokes considerations that should be at the forefront of any research project: about what our research can offer and how to communicate its value to others.
During the second week of May the Bush Theatre in London hosted Fertility Fest – an arts festival dedicated to fertility, infertility, modern families and the science of making babies. Organised by Jessica Hepburn and Gabby Vaultier, the event brought together artists, fertility experts, regulators, infertility patients and campaign groups over multiple days to talk about a huge range of issues relating to the modern ‘condition’ of human reproduction. I arrived at the Bush Theatre on Wednesday 9 May and attended again for a full day on Sunday 13 May. With my festival wristband and a schedule of events, I was ready to explore!
Wednesday: There’s ‘more to life’ than having children
Wednesday’s evening event, hosted in partnership with the Fertility Network, revolved around the statement ‘there’s more to life than having children’ and opened with talks by Jessica Hepburn, who introduced her new book, and Jody Day from the support network Gateway Women. These talks were followed by short PechaKucha style presentations (20 slides shown for 20 seconds each) by a range of guests who talked about their ‘plan B’ or personal pathways to accepting unwanted childlessness, from swimming the English Channel, to adopting a dog, establishing a childless-not-by-choice magazine or practicing yoga.
Louise Ann Wilson talked about her project Warnscale, which is a walk through the fells of Buttermere in Cumbria designed specifically for women who are biologically childless-by-circumstance. She emotively described the therapeutic value of immersing oneself in the natural environment and how the embodied practices of walking and mapping the landscape can encourage new opportunities to reflect on life as well as life events that remain elusive, such as the birth of a wished-for child. Wilson commented on the lack of social rituals for women who feel grief for the absence of the life event of becoming a mother and she is currently developing Warnscale to include a walk that explores men’s experiences of infertility. Drawing also on observational research in fertility clinics, Wilson was able to trace parallels between and juxtapose the highly managed process of IVF in the laboratory and cycles of change in nature. Similarly to how reproductive processes and bodies are ‘mapped’ in minute detail through the process of fertility treatment, there is potential for re-imagining this process in/onto/through the natural landscape as a way to make sense of complex personal experiences.
Sunday: Men’s rooms, egg freezing and the awkwardness of language
I started Sunday with a session that focused on men’s experiences of infertility. The title of the session, ‘You, me and the pornstar’, turned into a key point of discussion for the panel with several comments made on how its emphasis on ‘the pornstar’ offered a limited portrayal of men’s experiences of IVF as being defined solely by the task of semen production. This discussion tied in well with Aaron Deemer’s presentation of his art photography project ‘Please make yourself uncomfortable’ through which he documented ‘sample rooms’ or ‘men’s rooms’ in fertility clinics across the UK.
I have never seen a sample room, or ever really thought about them in any detail, but seeing Deemer’s photos and hearing him talk about them emphasised the complexity of these rooms as both designed-for-a-purpose and simultaneously highly emotionally charged, full of hope for success and fear of disappointment, and embroiled with awkwardness. The rooms were all very different – one of them had a chair that looked rather like one you would find at the dentist’s, another was almost bare apart from a black and white poster of the Eiffel Tower, and a third had imposing metal bars across the window. Deemer’s discussion of his photographs drew humorously on the strangeness of these settings but it was also clear that he had found a unique entry point for opening up conversations about much broader questions of masculinity, negotiating a biomedical phenomenon in a culture that assigns value to ‘natural’ procreation and how to articulate the ‘male role’ in fertility treatment.
The session also included a reading of the play ‘The Quiet House’ with an introduction to the play’s background story by its playwright Gareth Farr. The play offers an intimate insight into a couple’s experience of fertility treatment and the effect this has on their relationship and life, with a particular voice given to the male experience of infertility. We only got to hear a snippet of the play, but it touched pertinently on the difficulty for men who feel side-lined in a treatment process that is almost entirely focused on the female body and the hurt of deciding when is the ‘right’ time to stop treatment. Throughout this session a central conversation point was the struggle to re-imagine a life-event that so many assume will happen in the most private and intimate sphere of life, and the associated difficulties of negotiating an unfamiliar, medicalised and highly controlled method of reproduction that takes place in a clinic, a sample room and a laboratory.
Another highlight of the day was the ‘Fertility Fight Club’, where four speakers had ten minutes to talk – honestly and provocatively – about ‘what makes you angry’.
Josh Appiganesi talked about how fathers often seem to be defined by their absence – men tend not to write books or start festivals about making babies and he made a point about how male philosophers have also been tellingly quiet about the experience of becoming a father. He commented on the need for men to talk more about ‘what becoming a father is really like’. Perhaps unusually, a couple of years ago Appiganesi chose to do his talking on camera, which resulted in a documentary film – The New Man – about the ‘ordeal of becoming parents in our era of IVF, late reproduction, and the crisis of masculinity’.
Emily Jackson talked about social egg freezing and the legal time limits around egg storage in the UK. Currently, she explained, eggs can be stored for up to 10 years (with up to 55 years for women who have become infertile due to a medical condition). This means that women who freeze their eggs for ‘social reasons’ (such as not yet being with a suitable partner) have a relatively short period of time to use their eggs. For instance, women who freeze their eggs during their 20s (at recommended peak fertility) are likely to have to use or dispose of their eggs before they are needed. Jackson emphasised how the legal framework, which was designed before social egg freezing was widely practiced, decidedly works against best clinical practice.
Diane Chandler, author of the novel Moondance, was deliberatively provocative in her round of the fight club where she spoke to the question ‘Secondary Infertility: What’s the Problem?’. Chandler argued that primary infertility (wanting but struggling to conceive a first child) and secondary infertility (wanting but struggling to conceive a second/third/fourth child) are not comparable and that trying to start a family is different to ‘trying to complete one’. It is not always appropriate, she argued, that people experiencing primary and secondary infertility share the same supportive spaces (such as online forums) and she presented examples of hurtful comments and competitive language used to make claims about whose grief is worst. In an honest provocation, Chandler made the case for not comparing experiences and emphasised secondary infertility as a different kind of infertility struggle.
Stella Duffy argued ‘Yes I Wanted Children. No I Don’t Want Your Children’ and talked frankly about her own infertility experience of trying to have a child followed by a cancer diagnosis. Duffy stressed the lack of words to describe parents of children who died and extended this inadequacy of words to the language of infertility. ‘There is not a word for us’, she exclaimed, people who wanted to be but did not become a parent are defined by words that emphasise their lack – childless, infertile, non-parent – and the more positive alternative child-free centres on the child as opposed to the person. The English language reflects, Duffy argued, the cultural persistence of pronatal privilege that tells us that it is better and right to have children. There is an urgent need for better words that encompass people who are not the parent they wanted to be but does not define them in terms of this. Echoing many of the other talks, the message was that dialogue follows from having the right, inclusive words – perhaps a task to be revisited at next year’s Fertility Fest…