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.
On 27 November the research team hosted an advisory board lunch and meeting where we discussed the progress of the project so far. Manuela Perrotta introduced the background to the research framing and design, followed by short presentations on the fieldwork completed. I summarised the interviews with IVF patients and Alina Geampana talked about the professional interviews and lab observation work. The advisory board consists of individuals with a wide range of multidisciplinary expertise, which elicited lots of constructive questions, comments and recommendations that we will take forward. We are excited to further explore the opportunities that come with being exposed to – and challenged by – perspectives, methods and literature from other disciplines and fields of research.
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.
On 25 July I went along to a special event hosted by the Science Museum in London to celebrate the 40th birthday of Louise Brown, the first ever IVF baby to be born. Brown shared the stage with Professor Roger Gosden, who is an expert in female infertility and former doctoral student of the IVF pioneer Robert Edwards, and their conversation was chaired by Roger Highfield from the museum. Together the three meandered through decades of IVF history as well as reflections on what the future of IVF might hold.
After the talk and a grand finale happy birthday singalong, all guests were led through to a pop-up fertility fair in the museum’s flight gallery. Embryologists from London fertility clinics talked visitors through the basics of modern IVF, including (of particular interest to me) how they use time-lapse imaging tools to inform the embryo selection process. The embryologists narrated clips of developing embryos to explain in detail what IVF is and does, as well as what it can’t do. Given the focus of the ‘Remaking the Human Body’ project on visual tools in IVF, it was exciting to encounter embryo imagery in a semi-public, non-clinical setting – the enlarged films of dividing cells were employed very effectively to demonstrate the spectacle of IVF and capture people’s interest.
In line with the theme of the evening, following the fair I visited a new Science Museum exhibition entitled ‘IVF: 6 Million Babies Later’. This exhibition, which will run until November 2018, traces IVF from its initial development right through to the present day.
Controversial treatment
The exhibition included a variety of medical equipment that is routinely used in fertility treatment, such as pipettes, petri dishes, needles and the numerous medicine vials required by patients going through an IVF cycle. It also displayed some of the original laboratory and clinical tools used in IVF during the 1970s – the time at which Edwards, along with Patrick Steptoe and Jean Purdy, were developing the technique. There was a desiccator, which is a large glass jar that was used to incubate embryos ‘in vitro’ (literally ‘in glass’), and early versions of surgical tools used to diagnose fertility problems.
Steptoe, I learnt, led the way in advancing laparoscopy, which is a surgical technique that enables surgeons to see the reproductive organs and retrieve eggs without making major incisions through the body. Gosden explained that this technique was initially feared by the public and critiqued by physicians for being an unsafe, unethical and experimental procedure. While the early advancement of laparoscopy was not without risks, it paved the way for what has since become a central procedure in IVF treatment and gynaecology more broadly.
The widespread public opposition to and panic around IVF at the time of Brown’s birth in 1978 was emphasised throughout Gosden and Brown’s conversation. Brown recollected how she had gradually come to realise the extent to which her parents had shielded her from the public controversies and protests that surrounded her birth as the first ‘test-tube baby’. Gosden described social anxieties about the consequences of ‘tampering’ with the ‘natural’ reproductive process and how this permeated the media coverage of IVF pioneers Edwards, Steptoe and Purdy, who were portrayed as ‘crazy scientists’ attempting the absurd.
Patient pioneers
The exhibition also offered a glimpse into the early life of IVF through original research notebooks belonging to IVF laboratories. Some of these contain handwritten clinical data for 282 women from all over the UK who volunteered to participate in hundreds of egg collections across the 1960s and 70s. While the successful birth of Brown was a ground-breaking and celebrated moment in IVF history, Gosden also drew attention to the decade of experimentation that preceded Brown’s birth and the hundreds of women who underwent invasive procedures without getting the baby they intensely wished for.
During the early years of IVF, the treatments offered were hugely unsuccessful and it was not uncommon for clinics to have success rates of zero. Within this context of unlikely success, the fact that women were undergoing procedures that were supported by very limited evidence offered a testament to what they were willing to undertake for a tiny chance of having a baby. These women and men are the IVF pioneers that we do not often hear about, and Gosden highlighted how their commitment and hope laid the foundation for developing safe and effective fertility treatments for future infertility patients.
Most pertinently for me, the evening as a whole offered a unique opportunity to reflect on the current state of IVF in light of the personal life stories of people who were intimately involved in the earliest stages of its development. The strength of the exhibition specifically, lies in how it portrays and gives a voice to the complex embodied experiences of people who have undergone fertility treatment.
Click here to see more articles on IVF from the Science Museum.
At the beginning of this month, I had the pleasure of attending one of the biggest conferences on reproduction, organized by the European Society for Human Reproduction and Embryology (ESHRE). The ESHRE 2018 annual meeting took place in Barcelona, so, needless to say, I was brimming with excitement not only for the tens of presentations I was going to attend, but also for the amazing location (bonus: the venue was a 10 minute walk from one of Barcelona’s amazing beaches). Sun and beaches aside, the conference was interesting, well organized, and impressive in size and breadth. As a sociologist, I have gotten used to smaller conferences, so I was in for quite the treat: ESHRE had a record attendance this year of almost 12,000! It can be easy to get overwhelmed, but I was there with a purpose: to learn more about the current uses of time-lapse and about social aspects of infertility, more generally.
Time-lapse
Without a doubt, the meeting has confirmed that time-lapse is being used for research in many ways, perhaps more than was initially anticipated by anyone. Time-lapse tools allow embryologists and researchers to study the myriad of factors that can potentially influence pregnancy outcomes. Although add-ons have been portrayed as controversial in the UK media (Most still are: see, for example, recent headlines about the endometrial scratch), it seems to me that time-lapse has nonetheless been integrated into research practices. A number of authors have used time-lapse imaging as data that can generate new knowledge about how to pick the best embryo. We can now look at factors such as fragments, vacuoles, and even type of embryo movement, categorize these phenomena and conduct fairly large studies on outcome correlation, as panels at ESHRE have shown. Of note for me was Dr. Cristina Hickman’s presentation on the multiple uses of time-lapse machines in clinics around the world. Interestingly, she stressed how different labs have integrated this technology to different degrees, showing how introducing new ways of looking at embryos (including selection algorithms) is a process that needs significant work on the part of professionals – work that, however, many say is worth doing in the end. Our own work on time-lapse was represented in the digital poster area, where I was delighted to see many scroll through our summary of preliminary findings.
Fertility Awareness and Men
On top of all the fascinating insights into time-lapse and lab practices, ESHRE 2018 also offered food for thought on fertility awareness, gamete donation, health outcomes for ICSI and IVF children, social egg freezing and many other related topics that I unfortunately have no space to list in a blog post. Taking into consideration the panels I attended and the topics that caught the public’s attention, a couple of prominent themes emerged for me. As infertility is an issue that more and more couples face, the need for fertility awareness education is becoming quite pressing. Presenters and commentators alike noted that this type of education should start early. However, quite a few presentations stressed the absence of men from this conversation. I got a sense that health professionals are worried about this and luckily, researchers are starting to have more conversations with men about reproductive timing and infertility. However, the overwhelming sense was that more work needs to be done to get men involved.
Men’s absence was highlighted in another way: women who undergo social freezing overwhelmingly do so because they haven’t found the right partner. Prof. Marcia Inhorn delved into this subject with data from qualitative interviews conducted in the US and Israel. Interestingly, this is one of the main stories that the media picked up. We are now talking more about men’s lack of a sense of urgency when it comes to having kids. This phenomenon, however, might be problematic in light of increasing knowledge that men also undergo a fertility decline as they age.
To add to all the interesting discussions, I was very glad to see social science perspectives represented at the conference and think we need to start building more bridges with the medical community. This is something that RHB aims for in our future endeavours. We also very much look forward to our next ESHRE meeting!
A big event on the conference calendar this year was the ‘Remaking Reproduction’ conference organised by ReproSoc (Reproductive Sociology) at Cambridge University. With great enthusiasm, all three members of the research team attended three days between June 27-29, and Manuela Perrotta presented some initial work from the project in the stream entitled ‘Mediated Reproduction’. Her paper examined how time-lapse imaging tools are involved in creating or reconfiguring knowledge about embryo development and what constitutes ‘the best embryos’ in the context of IVF treatment.
The early summer conference season has been quite eventful for us. We had the pleasure of presenting some of our initial findings at two events: the British Sociological Association’s (BSA) Human Reproduction Study Group Annual Conference on May 24 and Visualising Reproduction on June 4. Although both took place in Leicester at De Montfort University, they each took a unique and innovative angle on issues emerging in reproduction studies. I here reflect not only on our project’s fit within larger conversations on assisted reproduction, but also on the impressive breadth of topics covered at these two conferences.
Reproduction and the Law
With a very timely choice of topic, the BSA event highlighted critical intersections between reproduction and the law. Coupled with the anticipation of the Irish referendum, I was reminded that the law plays a crucial role in determining our reproductive choices. As someone who has only recently moved to the UK, Professor Emily Jackson’s plenary talk was particularly eye-opening with regards to the legal work that still needs to be done here in order to improve women’s choices. Of course, improvements are necessary everywhere, but the UK has its peculiarities and unique challenges. Most notably, the country has a 10 year storage limit on eggs frozen for social reasons, thus not always allowing women sufficient time to use them to conceive. (An online petition you can sign to change this is in place at https://petition.parliament.uk/petitions/218313) I was also intrigued to find about the various barriers women face as a result of the 1967 Abortion Act. Unquestionably, it is time to change regulations to improve access. Professor Jackson’s talk was an important reminder that we can and should push further.
The presentations I attended throughout the day allowed me to reflect on how we might best regulate gamete donation, surrogacy, and egg freezing, to name just a few topics that came up. The range of global contexts (including North America, Europe and Asia) that presenters explored was impressive and highlighted how ethical challenges are influenced by national policies. In particular, economic inequalities have affected assisted reproduction practices, as governments often fail to keep up with such the changing landscape of assisted reproductive technologies. The regulations required to protect those who are vulnerable, such as surrogates and gamete donors who are based in lower-income countries, are either flawed or non-existent. The BSA event provided a vital space for discussions on how we might proceed. Even though many of us are unsure of the best course of action, starting these conversations is definitely a promising start.
Presenting on Time-lapse
The use of imaging technologies in IVF has been itself caught up in larger debates on commercialisation and best course of treatment. I tried to capture the contentious place that such technologies occupy today in the world of IVF during our presentation at the BSA event. Views on time-lapse have changed tremendously even during the course of our research.
The two conferences we attended perfectly capture the debates/conversations that time-lapse is part of. On one hand, it is a contested technology that potentially calls for more regulatory action in the UK. On the other hand, it captures imaginations with its ability to give us unprecedented insights into the life of embryos. This second aspect brings me to the visual of reproduction and how this was explored during the Visualising Reproduction event.
Visualising Reproduction
With topics ranging from the history of embryo illustrations to menstruation in the visual arts to holographic visualisations of the clitoris, Visualizing Reproduction was fascinating, unique, and much-needed conference that showcased the significance of reproductive imagery. Listening to the invited speakers (including our very own Manuela Perrotta), I realised that many topics we study in the social sciences are intricately related to art and visualisation. In particular, the conference highlighted collaborations between artists and academics. This stood out me as interdisciplinarity at its best. For example, Isabel Davis from Birkbeck and artist Anna Burel talked about the Experimental Conception Hospital imagined by Robert Lyall, a 19th century physician. Anna’s illustrations of pregnant women and art pieces made Lyall’s imagined institution come to life. Another example of amazing work from artists was Liv Pennington’s exploration of pregnancy tests – a technology so mundane yet at the same time so mysterious. Thinking about such work, it strikes me that the visual has the power to break down taboos and barriers, as also exemplified in representations of menstruation in the arts – a topic that Camilla Røstvik brilliantly covered in her presentation.
Visual Representations has taught us that fruitful collaborations between artists and academics might be able to provide a better-rounded picture of the topic studied. It has also taught us that we need to further emphasize the visual in our project’s exploration of time-lapse and its uses.
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…
Welcome to the ‘Remaking the Human Body’ project blog! The research team will use this website as a platform for sharing news, thought pieces and commentary relating to our research. In particular we are interested in IVF, biomedical imaging technologies, and visualisations of reproduction and the reproductive body.
During the second week of May the Bush Theatre in London hosted 
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’.