Biomedical imaging technologies, professional and lay visions

Author: Josie Hamper

Patients and IVF add on treatments

Since the start of the ‘Remaking the Human Body’ project there have been some significant developments in debates around the state of fertility treatment in the UK. Just over two years ago, BBC Panorama presented a documentary entitled Inside Britain’s Fertility Business (28 November 2016) that questioned the quality of scientific evidence to support ‘add on’ treatments in IVF. In this context, add ons refer to treatments, procedures or tests that are offered in addition to ‘standard’ IVF. These are often available to patients at additional monetary cost.

The Panorama documentary emphasised that some treatments are offered to fertility patients without being supported by rigorous evidence that they work, and it set out concerns about patients not being fully informed about the limitations of these treatment options. Designed to provoke, the documentary opened with three questions that revolve around trust, effectiveness and patient protection (reproduced in direct quotation here): can we trust everything Britain’s multimillion pound fertility industry tells us; how effective are the treatments offered to thousands of couples by fertility doctors; and should Britain’s fertility patients be better protected?

The discussion around add ons was once again reinvigorated following the publication of findings from a randomised control trial undertaken in Australia that presented no clear evidence that one particular add on, the endometrial scratch (where the lining of the womb is ‘scratched’ to help the embryo implant), improves live birth rates. This research was presented at a European embryology conference (see Alina Geampana’s post on her visit to this conference here) and prompted media attention to the moral quandaries of patients undergoing, and often paying for, treatments that are still-to-be proven (see for instance this article by the Guardian).

The position of time-lapse embryo imaging

It has been important for the research project to follow discussions about add ons, given that time-lapse embryo imaging technologies are included in the Human Fertilisation and Embryology Authority’s (HFEA) list of add on treatments, and I am particularly interested in how these debates might relate to patient experiences of IVF. At the time of writing, the HFEA categorises time-lapse as ‘amber’ in their traffic light rating system, which means that early studies on the effectiveness and safety of time-lapse have produced promising results but more evidence is needed to support its use.

Improving patient information

Since the Panorama documentary, questions about add on treatments continue to shape the UK media landscape around reproductive technologies and have periodically re-emerged in public debates. These debates often revolve around the need to improve the information that is provided to patients about their treatment options. For instance, the HFEA’s 2017-2020 strategy includes the aim to ‘increase patients’ understanding of the science and evidence base behind treatments and added extras known as add ons, and of their safety and effectiveness.’ Following this, in the summer of 2017 the HFEA launched a fertility patient survey that investigated patient experiences of add on treatments. While the majority of respondents (at 66%) felt satisfied with the information they received about add ons and their evidence base, a large proportion (at 34%) also felt that they had not received enough information and 44% rated their overall experience of being offered add on treatments as negative. Concerns that patients had about add ons were often related to the price of treatment combined with complex emotional pressures to try ‘anything’ in the hope that it might work. A summary of the 2017 survey results can be found here.

A more extensive follow up survey was commissioned by the HFEA during 2018. The results of this survey showed that 77% of fertility clinic users who had used an add on were satisfied with how open and transparent the costs of these were. And 69% felt that they understood the scientific evidence around the effectiveness of add on treatments. Interestingly, this survey included a much broader categorisation of add on treatments than the official definition that appears on the HFEA’s website; for instance, it included massage, meditation and ‘other complimentary treatments’ within the response options for add on treatments. Importantly, the survey also found that patients’ experiences of add ons was shaped by whether they were undertaking fertility treatment on the NHS or privately, as well as how many cycles they had been through so far, where people in later rounds of IVF were more likely to consider additional treatment options. The full 2018 survey report can be found here.

In the summer of 2018, the HFEA published the 9th edition of their code of practice, which includes new and more explicit text that requires fertility clinics to inform prospective fertility patients about the add ons that they may be offered, as well as any evidence of their effectiveness or potential risks. This is significant in that it places the responsibility to provide appropriate information on clinics rather than relying on individual patients to make informed choices. Later on in the autumn, the HFEA also published a short statement about add on treatments, which once again emphasised that fertility patients ‘deserve consistent, evidence based treatment’ and reiterated their concern ‘that too many patients are being offered unproven treatment add-ons.

Patient information, evidence and hope

The HFEA plays a central role in shaping the regulatory framework around fertility treatment by emphasising the importance of unbiased, clear information; however the Panorama documentary touched on an important difficulty in the debate around add ons, which is the disconnect between a commitment to evidence in a fast-moving medical field and the fact that patients are drawn to the promise of hope in navigating their treatment options. While Panorama highlighted that hope is not a good enough justification for using treatments that are unproven, from a patients’ perspective the offering of hope may have extremely powerful appeal. As one IVF patient explains at the end of the documentary: ‘with all these add on treatments, it kept us going that there is still hope.’ Fertility author Jessica Hepburn has also written very poignantly about her desire to ‘try anything’ – regardless of whether it is evidence based – during her eleven attempted IVF cycles.

The conventional notions of patient information and ‘informed choice’ are important but do not fully recognise all the other factors that impact on how people feel about their treatment options and how they weigh up the perceived harms versus potential benefits. Hope, for instance, is a very central emotion and strategy that plays into patient experiences of IVF as well as their treatment decision-making. The importance of having hope makes a lot of sense given that patients are undertaking a procedure that has, according to the HFEA, a less than 30% success rate. Our interviews with IVF patients in this project are still ongoing, yet there are already narratives emerging from the interview material that offer some initial insight into the complex nature of making decisions in a context where consequences and outcomes are, at least partially, unknown.

Advisory Board Meeting

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.

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.

Remaking Reproduction in Cambridge

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.

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…

Welcome

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.

You can also follow us on Twitter @RemakingBody.

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