Biomedical imaging technologies, professional and lay visions

Tag: Time-lapse

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.

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.

Reproduction in Law and Art

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.

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