Biomedical imaging technologies, professional and lay visions

Category: Events

Thinking about the difficult questions: Fertility Fest 2019

We go to many exciting conferences and events throughout the year. Fertility Fest, however, is very special in that it bridges the gap between art and science, lay and professional. Infertility as a topic of discussion stirs intense emotions and Fertility Fest provides a very much needed outlet to express such feelings and have conversations about them. Eager to immerse myself in this year’s festival, I attended the Big Fat Festival Day this May. I must also mention here that the 2019 venue, The Barbican Centre, was a fabulous fit and contributed to the convivial atmosphere of the festival.

When it comes to infertility and IVF treatment, some topics come up more often than others. As such, I would like to focus on the conversations that stood out for me this year – the conversations that, I thought, were novel and really made me think about some of the more painful and uncomfortable questions. For example, what happens when IVF treatment doesn’t work? When our hopes and dreams disintegrate? How does one re-evaluate their life and choices? How does one grieve? And is there meaning to life beyond having children?

During the opening session, Lisa Faulkner talked about her personal journey and the decision to adopt. Her experience really conveyed the difficult choices one has to make after several failed rounds of IVF. This issue seems poignant to me, yet seldom discussed. How does one know when to say no when we put so much emphasis on hope and being positive? Lisa talked about her initial reluctance towards adoption – something that I found refreshing. There are too many people who assume that adopting should be an easy decision for infertile couples, when, in fact, it is not. It was apparent to me that we need to have more conversations about adoption, who it’s for and who it isn’t for.

The Invisible Man was the morning panel that piqued my interest (but, trust me, it was very hard to choose). The focus on men made me reflect on the tough situations that are particular to the male experience of infertility. Elis Matthews talked about being diagnosed with azoospermia and struggling with identity, faith and the meaning of life. The devastation of hearing the word ‘zero’ (sperm) from a doctor really drove home how insensitive some medical encounters can be. Elis, however, admiringly managed to find humour in the situation. Men talked more generally about having to deal with tough questions about meaning and fulfilment – questions that they had to confront because of their experience with infertility. As a woman, I was moved to hear actor and writer Rod Silvers talk about feeling that he had failed his partner when he found out he might not be able to ‘provide’ her with biological children. I wondered if we really understand what infertility means for a couple as a unit, not just individually.

The highlight of the day, for me, however, was the premiere of Irina Vodar’s documentary Anything You Lose: a movie that intimately captures her infertility journey over 7 years. The camera follows Irina and her husband to multiple clinics, documenting their pursuit of parenthood. Heartbreaking moments of disappointment invite the viewer to reflect on the emotional toll that infertility takes on couples. Echoing the questions I outlined above, Irina’s story forces her and the audience to ponder the meaning of life without children and what we do when things don’t go the way we planned. What I appreciated most about Anything You Lose it that it doesn’t fall into Hollywood clichés about infertility. It doesn’t gloss over the complex medical procedures and decisions that patients have to make. It also shows the toll that infertility can take on relationships and the raw emotions it brings out of people. I came out of the Barbican Centre with many things to think about. In fact, I am still pondering questions as I’m writing this post.

Thank you Fertility Fest for another great year!

QHRN 2019

Qualitative health researchers are well aware that we work in a world dominated by big data, quantitative research, and the gold standard of randomized controlled trials (RCTs). Upon hearing about a conference focused not only on contemporary health issues, but also on qualitative methods, the RHB team jumped at the chance to participate. Not unexpectedly, we are very glad we did.

The QHRN 2019 conference held last week on March 21-22 in London highlighted the diversity and richness of qualitative methods used by attendees. Our panel, entitled “Critical perspectives and social theory” allowed us to present our work alongside other critical health scholars. The topics discussed included maternal care (Lianne Holten), dieting (Hilla Nehushtan), community health work (Ryan Logan), and LGBTQ+ mental health (Rachael Eastham).

The use of innovative methods was a recurrent theme throughout the meeting. Presenters made me reflect on all the different ways we can use the internet, for example. Stephanie Lanthier’s (University of Toronto) presentation opened up discussions about using online forums for collecting data, while Carmel Capewell (Oxford Brookes University) talked about some of the limitations of online resources for patients with rare illnesses. I especially appreciated Jenevieve Mannell’s (UCL) presentation and thoughts on qualitative data collection in trial protocols. This discussion highlighted how much we still need to push for the integration of diverse methods into mainstream research. The lack of interest in qualitative methods in the RCT world comes as a result of problematic hierarchical approaches to data. Although qualitative researchers do not dispute the need for RCTs, we also believe there is much more we need to know about health outcomes and the patient experience in order to make informed policy decisions.

Last but not least, the conference symposium introduced us to the use of Story Completion in research – a novel topic for many attendees, including me. Naomi Moller from The Open University walked the audience through the exciting possibilities that such a method offers qualitative researchers. What is Story Completion? you might ask. It is a qualitative research method where participants express their views on topics by finishing a story that was started by the researcher. More specifically, symposium presenters talked about projects where they used Story Completion to collect data. Virginia Braun (The University of Auckland), for example, spoke about using the method in research on healthy eating views, while Toni Williams (Leeds Beckett University) used it to explore narratives of disability and physical activity. Although the method might sound straightforward, presenters made it clear that one must pay careful attention to context, characters, and making sure that the story elicits interest and richness in the participant responses. Story Completion is an exciting method that I will surely consider using in the future.

Needless to say, with such a wealth of information and topics discussed, QHRN 2019 was definitely a great start to our conference season!

Our Year in Review

2018 has been a busy year for the Remaking the Human Body team. We are happy to share that we have, so far, conducted observations at 5 sites and have interviewed more than 50 professionals and patients about their views on time-lapse, IVF technology, and add-ons in the UK. This year we are looking to finish data collection and are eagerly anticipating the start of our public engagement activities, generously funded by the Wellcome Trust through an additional grant.

By presenting preliminary findings at several conferences, we have incorporated useful feedback from scholars from various academic backgrounds. This, in turn, has helped us hone our questions and methods. We have greatly enjoyed presenting at conferences ranging from science communication meetings to medically-oriented meetings, such as ESHRE. Below is a short list of some of the events we have had the pleasure to attend in 2018, with presentation title in parentheses:

Science in Public 2018 Conference, Cardiff, December 17-19. (Perrotta, M., Geampana, A., Hamper, J.A. “Predicting success: visual practices and predictive algorithms in IVF.”)

European Society for the Study of Science and Technology (EASST) Annual Meeting, Lancaster, July 24-28. (Perrotta, M. & Geampana, A. “Non-invasive predictions: visual predictive tools in IVF.”)

European Society for the Study of Human Reproduction and Embryology (ESHRE) Annual Meeting, Barcelona, July 1-4. (Perrotta, M., Geampana, A., Hamper, J.A., Giraud, AS. “The ethics of commercialization: a temporal analysis of newspaper coverage of IVF add-ons in the UK.”)

Science and Technology Studies Italia Meeting, Padova, June 14-16. (Perrotta, M. & Geampana, A. “Standardising professional vision in embryo imaging.”)

Visualising Reproduction – An Interdisciplinary Inquiry, De Montfort University, Leicester, June 6. (Perrotta, M. “Remaking Embryos. Time-lapse Microscopy and the Future of Embryology.”)

British Sociological Association Human Reproduction Conference, De Montfort University, Leicester, May 24. (Perrotta, M., Geampana, A., Hamper, J.A. “The IVF add-on debate: from techno-scientific breakthroughs to unproven treatments.”)

The previous year has also been a great one to immerse ourselves in the wider world of fertility treatment and education, through attending various public events:

Progress Educational Trust conference ‘Make Do or Amend: Should We Update UK Fertility and Embryo Law? – London, December 5

Fertility Show – London, November 3-4

40 Years of IVF at the Science Museum – London, July 25

Fertility Fest – London, May 8-13

Progress Educational Trust/ British Fertility Society event ‘The Real Cost of IVF’ – London, April 11

Fertility Show – Manchester, March 24-25

In particular, the Fertility Show and Fertility Fest have provided opportunities for us to learn and reflect on how we might proceed with public engagement activities in the near future. You can read some of our previous blogs for impressions from our work and how it fits into wider conversations on fertility and IVF treatment.

We anticipate a productive rest of 2019 and look forward to keeping you posted about our activities!

Why we go to the Fertility Show

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.

40 years of IVF celebrated at the Science Museum

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.

Fertility Fest 2018

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…

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