Biomedical imaging technologies, professional and lay visions

Author: Josie Hamper Page 2 of 3

IVF babble online fertility expo

With the closure or limited opening of fertility clinics due to the pandemic, fertility patients have had much fewer opportunities to connect with professionals through open days or fertility fairs, which prompted the magazine IVF babble to organise a live online Fertility Expo. I attended the event on 19 July and was able to explore a virtual showroom with over 50 booths belonging to fertility clinics, charities and other specialists. Many of the booths were staffed via a live chat function and offered the option to book online consultations. In the ‘auditorium’ I attended live talks about evidence and add-on treatments, the connections between stress and fertility, and the role of a fertility coach, as well as a panel session on self-care while trying to conceive, and I watched two short films explaining how Embryoscope works. The range of topics explored was impressive.

I was particularly struck by the international spread of speakers and clinics represented at the expo. While it comes as no surprise that fertility treatment crosses borders, travel within and between countries has become synonymous with risk and danger during the pandemic. Restricted travel has had huge impacts on planned or initiated fertility treatment abroad and media reports have described desperate situations where people have been unable to retrieve babies from surrogates (see here). Inevitably these new risks and limits to mobility will place additional stress on a process that can already feel risky at every stage.

The idea of avoiding unnecessary risk has become a familiar frame of mind over the last couple of months, although for patients in the midst of fertility treatment, calculations of necessity and risk are highly complex, emotional and shifting. Back to the expo, many of the talks I attended seemed to assume that the world of fertility treatment will be returning to ‘normal’ at some point in the not-too-far future, yet I questioned to what extent this will be the case. I wondered what long-lasting impacts the pandemic will have on the landscape of fertility treatment, patients’ decision-making processes and their maintenance of hope, as these respond to a contemporary moment of uncertainty.

Planning. . .

In response to the COVID-19 pandemic and all the uncertainties involved going forward, we are in the midst of significantly and carefully rethinking our planned activities, especially those relating to public engagement. We look forward to sharing the new details of our events as soon as we can. 

In the meantime we will keep updating the blog with other news and short reflections from the project.

The IVF Experience event

Update (31 March 2020): We have decided to also postpone our three May workshops. We plan to re-schedule all of our events for the autumn.

Update (14 March 2020): Following careful consideration of the current COVID-19 pandemic, we have decided to postpone our March workshops. We will evaluate whether our May events can go ahead in due course. Please check back for updates and we hope to see you on a future date!

We invite you to a workshop where all will have a chance to participate in a conversation about infertility, fertility treatment, scientific knowledge, embryo/medical imaging and patient decision-making. You will have the opportunity to hear more about our ongoing research in the area.

There will be snacks and drinks and lots of space for sharing ideas, opinions and experiences.

The workshop will take place in London on five dates across March and May 2020. For more information and to book your place, follow the links to our eventbrite pages:

CANCELLED 14 March 2020. Timber Lodge café, 1A, Timber Lodge Queen Elizabeth Olympic Park, Honour Lea Ave, London E20 1DY. Starts at 2.30pm. SIGN UP HERE.

CANCELLED 17 March 2020. The Vagina Museum, Unit 7&18 Stables Market, Chalk Farm Road, London, NW1 8AH. Starts at 6.30pm. SIGN UP HERE.

CANCELLED 13 May 2020. Yurt café, St. Katharine’s Precinct, 2 Butcher Row, London E14 8DS. Starts at 6.30pm. SIGN UP HERE.

CANCELLED 16 May 2020. Poplar Union, E5 Roasthouse, 2 Cotall St, Poplar, London E14 6TL. Starts at 2.30pm. SIGN UP HERE.

CANCELLED 28 May 2020. The Canvas: Café & Creative Venue, 42 Hanbury St, Spitalfields, London E1 5JL. Starts at 6.30pm. SIGN UP HERE.

These events are funded by the Wellcome Trust and supported by Fertility Network UK.

PET’s annual conference: Reality check! Questions of evidence

The Progress Educational Trust’s (PET) annual conference has become an established event in our December calendar and this year we continued the tradition. This year’s conference was entitled ‘Reality check: A realistic look at assisted reproduction’ and dealt with a range of topics including evidence, regulation, informed choice for patients and the ongoing ‘add-on debate’ (which I wrote about in a previous post). In total, there were 14 talks across the day, with each session followed by an opportunity for the audience to ask questions or offer comments to the speakers. In this post, I am going to reflect on some issues around evidence that emerged throughout the day.

We have entered ‘an era of profound unreliability’ said James Duffy in his talk about the production of evidence in which he detailed how research being done in the field of assisted reproduction often falls short of accepted standards of scientific rigour. For instance, findings from trials that are run entirely in one clinic cannot be translated to other clinics or patient populations, and he contended that research is often driven by commercial interests rather than an interest in the production of ‘gold standard’ evidence. Yet Nick Macklon explained how the reliance on randomised control trials (RCTs) in assisted reproduction research sets a very high bar for what counts as acceptable evidence, at the risk of ignoring other valuable data that are produced outside of the RCT framework. While RCTs are, with good reason, considered to offer the highest level of evidence in medicine, there are significant barriers to conducting RCTs in infertility research; challenges include the large required sample size, the long timeline from research design to implementation and results, and the issue of the trial sample not reflecting the patient group due to strict participant selection criteria. We were reminded that IVF was highly controversial and not supported by an RCT when developed in the 1970s (as I learnt from my visit to the Science Museum), which could serve as an argument both for tighter regulation and monitoring, as well as the benefit of allowing space for technological and scientific innovation. Sally Cheshire, chair of the Human Fertilisation and Embryology Authority (HFEA), brought the attention back to the patient in her speech (available in full here), emphasising that while it is crucial to continuously develop and improve IVF procedures we need to critically question whether it is fair for patients to pay for this knowledge production, especially if it could potentially cause physical, psychological or financial harm.

Another point that complicates the issue of evidence in contemporary fertility treatment is the discrepancy between what is offered in IVF clinics and the recommendations provided by the HFEA. Søren Ziebe opened the first session with a provocation whereby he questioned why over half of IVF cycles use pre-implantation genetic screening (PGS) when the HFEA determines this procedure to be without reliable evidence that it improves chances of pregnancy. Later in the day, Chris Barratt also argued that intracytoplasmic sperm injection (ICSI, where the sperm is injected directly into the egg) is vastly overused in fertility clinics. ICSI is used in over half of IVF cycles despite the HFEA and National Institute for Health and Care Excellence (NICE) guidelines stating that this procedure should only be used for male-factor infertility, which accounts for only about a third of infertility cases.

The fact that practices of fertility clinics go against national recommendations on such a large scale sends contradictory messages to patients, which can cause feelings of confusion and suspicion of professional judgement. These feelings are further amplified by the issue of significant gaps in current knowledge about reproductive biology and assisted reproduction; unexplained infertility and failed implantation emerged several times across the day as significant grey areas with an urgent need for better understanding. In the discussion sessions there was some conversation about the complexities of doctor-patient consultations as sites where the practice of evidence-based medicine intersects with individual clinical practice and patients’ needs, wants and choices. While debates about add-ons have been ongoing for years, it is on the ground, in the fertility clinic consultation room, that the actual discussions with patients about add-ons takes place. One practicing fertility specialist noted how, rather than simply running a search for evidence in a medical database and recommending fertility treatment based on this, consultations are more akin to a conversation and negotiation between the doctor and patient. Others noted how it can be extremely difficult to say ‘no’ to a patient who has a strong belief in or desire for a particular treatment or test regardless of its evidence-base, especially when the patient will potentially go elsewhere and pay for it. Explaining the mixed evidence for certain procedures is challenging in a situation where patients are often willing to take great chances in the hope that a treatment might work.

 

Fertility Show 2019: ‘Holding it together’

The vast exhibition hall of the London Fertility Show felt strangely familiar this year as I have come to recognise company stands, logos and people from previous years. A slight difference this year was the presence of a branch-out Fertility Fest, which is always of particular interest to me given the focus of my work on the patient experience of IVF.

My first session of the day was called ‘When Plan B was Meant to Be’ and opened with a reading by Lisa Faulkner from her recently published book ‘Meant to Be: My Journey to Motherhood’The reading set the scene for an open discussion about the emotional toll that fertility treatment takes on people, the difficult decision of when and how to stop trying, and what happens after IVF that did not result in a baby. Faulkner honestly articulated the enduring grief that follows ‘failed’ IVF while also conveying how a life without adoption, which was originally her Plan B for motherhood, is now unimaginable. Faulkner was joined on stage by fertility specialist Mohamed Taranissi, who offered his perspective on the importance of a personalised treatment procedure that attends to emotional wellbeing. Together they made a case for the importance of close communication between patient and doctor.

From there I attended ‘The Invisible Man’, which dealt with the male experience of infertility. Rod Silvers took to the stage with a personal provocation to the audience that set out a series of traditional male values that impact on men’s experiences of infertility. Silvers emphasised the intimately felt desire and expectation to ‘be the strong one’ in his relationship. Joined by Russell Davies, a fertility coach, and Sheryl Homa, a clinical scientist with a particular interest in male fertility, they challenged the widely accepted fact that women’s bodies are the prime focus of fertility tests and treatments, emphasising that there needs to be a more proactive testing of male fertility as routine in general practice healthcare. They also reflected on the absence of men’s voices in conversations about the emotional impacts of fertility treatment: they emphasised the importance of men talking to other men and lamented the decline of what Davies called ‘men talking around the campfire’ as a form of male peer support.

Entangled throughout discussions of the emotional aspects of infertility, control repeatedly emerged as an important theme: being in control and letting go. Faulkner described the huge relief of handing over control to her fertility specialist and how this gave her the feeling of ‘being carried’ through IVF. Silvers and Davies also spoke about the expectation that men should be the ones to ‘hold it together’ and guard their emotions. There are no established cultural tropes for men’s struggle with the emotional strain of IVF, which plays a part in the absence of men’s voices in discourses of infertility. I wondered about the phrase ‘holding it together’ and thought that the image of holding something – like loss and grief – together seemed pertinent to these discussions about the importance of talking to, caring for and supporting each other.

The designated Fertility Fest room seemed to offer an important space for attendees at this year’s show to hear real voices, conversations and personal experiences. This was a space where people could express their sadness – the sessions both opened with a Fertility Fest trailer where co-founder Jessica Hepburn states that ‘crying is good, isn’t it’. But it was also a space for joking and laughter. This acknowledgement of conflicting emotions reminds us, I think, of what the creative arts are particularly excellent at doing, which is bringing together tragedy and comedy in a way that is sensitive and honest to the complexities of personal experiences of coping, getting by and moving on.

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.

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