Author: Josie Hamper Page 2 of 3

Re.conceive + Remaking the Human Body

On 3rd September 2021

At the beginning of May we were delighted to spend an afternoon on Zoom with visual artist Sally Butcher, who is currently working on her Arts Council England funded project re.conceive. Sally approached us a while back to explore some of the synergies between our projects, which in different ways explore how reproduction, fertility and (non-)reproductive bodies are visualised or, sometimes, become invisible. Sally very generously shared some of her work-in-progress with us and we shared details about our research process and findings.

Each member of the research team was able to spend some time with Sally individually, and I include our reflections in our own words below.

Giulia: Sally’s work has inspired our conversation around reproduction in its different forms. We have especially discussed the relationship between medical knowledge, technologies and tools to visualise reproductive body parts or phenomena, and embodied experiences of them. We talked about the role of visual experiences in the construction of dominant narratives of gendered reproductive lives, and about the visibility and invisibility of specific reproductive experiences (for example infertility, miscarriages, abortion). We explored the notions of common and uncommon, known and unknown, expected and unexpected, we discussed how individual experiences relate to standardised measures and protocols and how people adjust and react to these, especially when these intersect with other medical, legal and geographical infrastructures (for example in the context of transnational reproductive travels).

Sally Butcher, ***Infertile Platitudes of Embodied Emptiness***, Sonogram 7/9, Archival Inkjet Digitised Monoprint (2020). Used here with permission from the artist.

Manuela: Among the many things we talked about, Sally and I had an interesting conversation regarding some of her work-in-progress – in my interpretation, an inspiring visualisation of the current developments in the field of embryology. Sally’s representation of sets of data embedded within an image of an embryo captured the current turn in embryology, by highlighting visually the novel and increasing use of data-driven algorithms in this field. In our research, analysing the case of Time-lapse incubators and their incorporated algorithms, we have investigated how new knowledge about embryos is generated in the complex interactions between professionals and machines. Although the use of algorithms has the potential to release unknown biological information on embryos (and therefore reveal their hidden secrets), algorithms do not simply add medical and reproductive knowledge as they require human input and therefore still rely on professional expertise.

Sally Butcher, *Human Algorithm V*, pencil and pen on paper (2021). Used here with permission from the artist.

Josie: During our conversation, Sally and I found many shared interests: for instance in how themes of absence and presence, and proximity and distance, shape ideas about reproduction as well as experiences of infertility. Being a geographer (academically and at heart!), I was drawn to how the body exterior and interior are ‘mapped’ in some of Sally’s work. We talked about the role of measurements, ordering, boundaries and boundary-making in relation to how reproductive processes are visualised and described. We also talked about the intrigue and mystery of magnifying or looking inside things.

Sally’s work also drew my attention to all the other kinds of imagery that fertility patients encounter before or during their IVF treatment. The focus of our research is on images and videos of embryos, which are exterior to the body or in vitro. But fertility patients often encounter a whole range of other visualising techniques that allow them to see inside their bodies. Ultrasound scans and dye tests, for instance, are routinely used to medically investigate female reproductive organs and check that these appear to be functioning ‘normally’. Ways of visualising bodies and embryos have (personal and political) implications for how infertility is seen and known, and therefore very real consequences for patients’ treatment experiences and trajectories.

Sally Butcher, **Sub-Maternal Exhaustion During a Pandemic**, Archival Photograph, egg, ink and hand gel (2020). Used here with permission from the artist.

Sally: My conversations with the Remaking the Human Body team have been invaluable in my research project. As a visual artist, Re.conceive was driven by the invisibility of Infertility within the new wave of maternal visual arts, where, as in society at large, infertility still remains mostly hidden and shrouded in silence. My project aims to explore and visually theorise the transformational process of ‘becoming’ a (M)Other, challenging traditional reproduction to reconceive a form of sub-maternal.

My meetings with Giulia, Josie and Manuela helped thoroughly contextualise my thinking, aiding my understanding of how infertility connects with the broader narrative of reproduction, as well as giving me greater insight into the scientific procedures within embryology and new practices with AI, and drew my focus onto patient interpretation of these new technologies. It especially moved my thinking toward the visual and verbal languages used within infertility. As a cultural researcher, I am drawn to the rhetoric of medical terminology, weighted in ‘success’ and ‘failure’, aimed at potential ‘geriatric mothers’ with ‘inhospitable uteruses’, and how this may sit alongside hidden personal testimonies, confessional spaces of the coded #TTC online community, or conversations with family and friends where it so often generates a real sense of unease. As an artist, I try to use a feminist gaze to challenge institutionalised power within visual tropes of medical and commercial imagery of infertility. These meetings enlightened me as to how much power we place in these visuals and how these become naturalised into our knowledges of reproduction, with narratives of the embryo constructed from the encounters we have with these visuals. The immediate resonances I felt between my own practice and the fantastic work being done by this team, has encouraged me to continue using this imagery, exploring its symbolism alongside the power of the maternal imagination.

Online event with the Royal College of Nursing Library & Archives

By Josie Hamper

On 11th August 2021

In Events

In the evening of 9 June our event ‘The IVF Experience and Positive Outcomes: A Social Science Perspective’ took place online in collaboration with the Royal College of Nursing Library & Archives. We were excited that so many people were able to attend from all over the UK (one of the definite benefits of online events). Our audience consisted of Royal College of Nursing members as well as many others who had experience of IVF or were simply interested to learn more about our research.

Sarah Norcross from the Progress Educational Trust opened the event as our host. Project lead, Manuela, introduced the Remaking the Human Body project as a whole, which has involved research with a wide range of fertility professionals as well as IVF patients and their partners. She then introduced the focus of the evening on the experiences of patients and partners going through IVF and what these tell us about the significance of care at different points in treatment.

In preparation for the workshop, Giulia, who manages our public engagement programme, had designed a series of live questions or small tasks that popped up for the audience at certain points during the evening. These questions offered a way for us to get a sense of the audience’s thoughts on the topics presented. It was exciting for us to see how people engaged with the research material and to see their reflections represented visually on-screen, for instance through word clouds like the one below.

In the second part of the workshop, I (a researcher on the project) presented an image of the ‘typical’ IVF treatment timeline that patients often see at the start of their treatment. These timelines, which are often found on fertility clinic websites or in their information booklets, usually emphasise the key moments in treatment such as hormone stimulation, egg and sperm collection, embryo transfer and pregnancy testing. They sometimes also provide some indication of a potential pregnancy and baby as the end point of treatment. Of course, these timelines have a very particular purpose, which is to provide a simple overview of what to expect during the treatment process and instil a sense of confidence in the procedure. But interviews with IVF patients and partners start to reveal all the other things that happen before, alongside, around and on top of these key milestones.

Our research explores peoples’ actual experiences of the IVF treatment process and how this impacts the decisions that they make and the kind of care that they need at different stages. Rather than present a neatly defined set of findings, the rest of the workshop involved a series of real quotes from interviews with patients and partners, which gave an insight into the diverse and complex lived experiences of IVF.

I will end this post with an example of an interview quote from our research with IVF patients, alongside the audience’s reflections on this quote in the form of a word cloud.

The research participant in the following quote explained how they went to a clinic consultation wanting to transfer two embryos in the same transfer procedure. They described having a conversation with their fertility consultant about this decision:

‘[The selection of embryos to transfer] was explained but kind of quite happily like “this is what we need to do and so this is what we recommend.” And the discussion around having two [embryos] put back in with the consultant here, they advised us to think about maybe only having one put back in but then talked to us about the reasons for that and the potential negatives of having two put back. And that was, felt like a really kind of good balanced discussion around what we wanted and what they would suggest.’
Research participant

Then we asked the audience to think of words or tags that capture what is being said in the quote. This is what they suggested:

The audience’s interpretations of quotes offered the stimulus for a really thought-provoking discussion at the end of the workshop about care and what good quality care means in the context of IVF. The feedback from the event also suggested that people enjoyed the opportunity to get involved and share their own interpretations of the research material. We are excited to explore more innovative ways of using online events in the coming final stages of our project.

Nordic STS conference 2021

By Josie Hamper

On 25th May 2021

In Conferences, News

We were very pleased that two papers from the project were presented at the Nordic Science and Technology Studies conference on 20-21 May, which was hosted (online) by Copenhagen Business School. I presented a paper on IVF treatment ‘add-ons’ from the perspectives of IVF patients and partners, fertility professionals, and the UK regulator. This paper explored the category of add-ons as something that exists ‘outside’ or on the boundary of what is considered ‘routine’ IVF. It considered how such a category works differently across national regulation, professional practice and patient experiences of treatment. Manuela presented a paper on ‘the travel of reproductive imaging from the lab to the social world’, drawing on material from patient interviews to explore what happens when images of embryos are encountered outside of the lab or clinic setting.

Now that all of our fieldwork is completed, we are excited to be able to start thinking across all the elements of our research. We will be sharing more of these findings over the course of the next months.

PET’s annual conference: COVID-19 and the fertility sector

By Josie Hamper

On 16th December 2020

In Conferences, Events

I had the pleasure of attending this year’s online Progress Educational Trust (PET) annual conference where the topics for consideration were fertility, genomics and COVID-19.

Consultant Jane Stewart opened the first session by speaking about the experiences of fertility clinics and she used the surfing analogy of ‘riding the wave’ through what was, and still is in many respects, a great unknown. One of the difficult issues for clinics throughout has been how to organise their reopening and patients’ return to treatment, where a more restricted allocation of resources can necessitate the prioritisation of some patients over others. This issue was taken up by philosopher and bioethicist Julian Savulescu, who described IVF as a ‘playground of ethical issues’. For instance, considerations about what constitutes elective treatment, non-urgent treatment, futile treatment, risk and safety involve a series of value judgements that are contestable. The ways in which fertility clinics approach the pandemic and its aftermath will likely involve judgements about how to prioritise the return of fertility patients, and Julian set out various ways to go about this process of prioritisation:

Should fertility treatment be offered on a first-come first-served basis? Should older patients receive treatment first given that they might be under greatest time pressure? Or should patients who have highest chance of success be given first access?

There are no clear or straightforward answers to which of these options is right or fair, but it is clear that decisions made at the clinic level will have a deep impact on patients’ lives. The uncertainties involved for patients about their treatment progression during the pandemic was taken up again in Session Four by chair Anna Veiga, who noted that there has been an increase in people seeking elective egg-freezing services during the pandemic as they anticipate a treatment delay of an unknown length of time.

Sessions Two and Three emphasised the wide range of unknowns about how COVID-19 – or more specifically the virus SARS-Cov-2 – affects reproductive function, semen, oocytes and foetuses. Allan Pacey, professor of andrology, noted the vast amount of research that has been done on this topic but he also emphasised the importance of maintaining quality assurance in all research. Session chair Fiona Fox reiterated the need to be cognisant and critical of a current infodemic, where poor research is given a platform and circulated in rapid media reporting. While the findings from studies on reproduction and SARS-Cov-2 so far are often inconclusive or difficult to extrapolate to the population level, the panels were largely positive about the low risks of the virus during fertility treatment and pregnancy, as well as for longer term fertility, yet they also insisted that this does not take away the fact that for some individuals COVID-19 can have devastating effects. Geneticist Sharon Moalem offered some fascinating insights into why men seem to be more susceptible to COVID-19 than women. Reflecting differential responses to many other viruses, female immune systems show a greater antibody response to infection, which impacts on the body’s resilience to severe illness as well as its response to vaccination.

The fourth session focused on the guidelines for fertility clinic reopening that have been developed by the European Society of Human Reproduction and Embryology. In practice, experiences from clinics have involved putting into place new staff and patient testing procedures, as well as sanitisation measures and the offering of telemedicine. While there was a sense that clinics have been able to respond to the new requirements effectively, concerns were expressed throughout the conference about limitations in other essential medical and health services. Specialist in reproductive medicine Luca Gianaroli noted that stillbirth rates have increased in many European countries, including the UK, during the pandemic. This, he said, is not due to the virus itself but rather the reduced access to antenatal and emergency care services. The impacts of reduced healthcare access was echoed by Human Fertilisation and Embryology Authority (HFEA) chair Sally Cheshire earlier in the day, who described how patients at the early stages of seeking diagnostic examinations via their general practice or routine gynaecological surgery are at a disadvantage in their potential fertility treatment progression. While there was a sense that fertility clinics have been able to respond relatively well to a new way of working, many other areas of the health services in the UK are experiencing backlogs and increased waiting times. These cases emphasised how fertility treatment is not an isolated ‘moment’ or procedure, but that it is closely tied to reproductive health more broadly as well as antenatal health and care. Attending to fertility patients’ broader trajectories of treatment is central to gaining a fuller understanding of the impact of the pandemic in this area.

Opening public engagement event: Visions of reproduction

By Josie Hamper

On 5th October 2020

In Events, News

We are very excited to introduce our first public engagement event after a series of cancellations earlier this year. This online event is entitled Visions of Reproduction: The Making and Meaning of Reproductive Imaging and it brings together sociologists, historians and artists who will speak about their work on this theme. We are also delighted to have partnered with the Fertility Podcast founder Natalie Silverman, who will moderate the event and take questions from the audience.

Join us on 12 November 2020 at 6pm.

For more information and a link to the booking site, please visit the Being Human Festival event page.

IVF babble online fertility expo

By Josie Hamper

On 20th July 2020

In Conferences, Events

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. . .

By Josie Hamper

On 15th June 2020

In News

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

By Josie Hamper

On 19th February 2020

In Events, News

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

By Josie Hamper

On 17th December 2019

In Conferences, Events

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’

By Josie Hamper

On 12th November 2019

In Events

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.