We were thrilled to launch our online event series ‘The IVF Experience’ this week. Our first workshop coincided with Fertility Network UK’s National Fertility Awareness Week, which is an whole week dedicated to having conversations about infertility and the realities of fertility treatment.
Our first workshop was hosted by Sarah Norcross from the The Progress Educational Trust. Workshop participants had wide-ranging experiences of and relationships to IVF, which fostered really important conversations about the complexities of treatment decision-making for patients, feelings of control and lack of control, and the role of embryo images.
We are excited to have more conversations with others at our next workshops! See our Events page for information about how to sign up.
In June 2021, Manuela Perrotta and I submitted written evidence to the UK government’s Women’s Health Strategy for England. We believe the consultation presents a key opportunity to improve the treatment experiences of IVF patients.
In our response, which you can find in full on our Publications page, we make five policy recommendations:
Women need a more coordinated provision of up-to-date information about IVF, especially information about novel IVF treatment add-ons
Improving the clarity, visibility and accessibility of already available information is a relatively low-cost measure that will bring timely positive change for IVF patients
There is an opportunity for the NHS A-Z website to direct IVF patients to the Human Fertilisation and Embryology Authority’s website for information specifically about new IVF treatment add-ons
Different understandings of evidence should be considered to improve the quality of information on new treatment add-ons
Accurate information about the nature of available evidence should be provided when treatment add-ons are experimental
We are very grateful to Inflect Partners for their advice in preparing our submission for this call.
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.
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.
As part of our public engagement programme, we had the pleasure to host an extremely fascinating event ‘Time-lapse Imaging and the Debate on Evidence: A Social Science Perspective’, which we organised with the Progress Educational Trust (PET). For this event, we invited professionals involved in various aspects of IVF treatment to discuss, in a joint open conversation, some findings from our research regarding evidence production in IVF and patients’ perspectives on time-lapse embryo imaging.
In a two-and-a-half hour virtual meeting, Sarah Norcross, Jen Willows and Sandy Starr from PET moderated discussions in three break-out groups composed of gynaecologists, embryologists, nurses and counsellors who specialise in fertility. Project lead, Manuela, and researcher, Josie, introduced the project and its main results concerning the production of evidence in relation to time-lapse embryo imaging tools, and patients’ experiences of receiving videos of embryo development produced by these tools.
First, the three groups discussed the role of evidence in relation to IVF treatment and time-lapse embryo imaging in particular. Questions were raised about how evidence should be produced in the field of IVF, what counts as evidence and how different kinds of evidence production may be taken into account when making decisions about offering certain tools or treatments. Some conversation happened around how different perspectives come into play when considering time-lapse embryo imaging devices as lab equipment rather than as a part of treatment. Some of the discussions encouraged us to pay attention to the benefits for each actor involved when a new tool is being used in the lab. A few participants were especially interested in the underlying economic implications of considering time-lapse embryo imaging as an add-on to fertility treatment or, on the contrary, an investment for the lab. Some underlined how these two are embedded elements of IVF services when it comes to the private sector.
Manuela and Josie also called the audience’s attention to the need for fertility professionals to reflect upon how time-lapse embryo videos are shared with patients, where this happens, and when in relation to patients’ treatment and medical encounters. Workshop participants were confronted with quotes and questions about patients’ relationships to embryo images and videos during and after IVF treatment and they were asked to reflect upon their own professional experience with this. Counsellors especially shared experiences about patients who had particular relationships to visuals during treatment and underlined how communication around such imagery is key to patients’ understanding of their treatment.
At the end of the workshop, some of the participants expressed their intention to build reflections that emerged from the workshop into their work practice, especially about how and when to share images and videos with patients, and how to make this a positive experience for them.
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.
Three months after our event on Visions of Reproduction at the Being Human Festival, we are glad to offer a new way to engage with our research project. If you are more comfortable with hearing than reading about vision (no jokes!), connect and listen to the wonderful podcast that Natalie Silverman has produced for The Fertility Podcast (also embedded below).
In this podcast, Natalie accompanies the audience through the topic of visualising reproduction in historical, sociological and aesthetic terms, introducing and interrogating expert scholars and artists whose work dives into visual representations of conception, pregnancy, and miscarriage. The listening experience is a gripping one, where vision becomes imagination, shaped by the words of people who describe the making and meaning of imagery in ancient books, biology labs, contemporary fertility clinics, and in personal artistic creations and performance. We hope you enjoy!
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.
Natalie Silverman, founder and voice of the Fertility Podcast, led the audience through our first event ‘Visions of Reproduction’ where speakers shared and discussed a wide range of videos, pictures, drawings, prints and embroideries of embryos, foetuses, pregnancy tests, pregnant and not pregnant bodies.
As part of this event, we ran a poll among the audience asking them (anonymously) to enter three images about reproduction that they had come across in their life. We received so many fascinating responses! Pregnancy tests, ultrasound and embryo were definitely the most chosen words, but people had also come across paintings, celebrity pregnancy photos, a real-life foetus-museum, 3D scans and many more. People are confronted with reproductive images multiple times in their lives and in very different situations.
Josie Hamper, from our research team, opened the event by presenting some unpublished results from the study. She launched a poll where the audience was invited to select the correct description for an image shown on-screen. People selected almost all available answers, including: A human embryo; An IVF embryo; Eight cell embryo; Grade one embryo; A potential baby; and baby’s first picture. It was revealed that all answers did in fact describe the image and that the diverse responses reflect different perspectives according to people’s expertise, experience or agendas. Josie accompanied the audience through the data of her own research on IVF patient’s experiences of receiving time-lapse videos of embryo development. She illustrated how videos may be welcome by some who receive them, while creating more uncertainties for others, especially if they feel unequipped to interpret what they are seeing. She ended by inviting a more nuanced public discussion around time-lapse embryo imaging technology, and the use of the videos and images that derive from this technology, beyond the clinic.
This question was taken up by Tabitha Moses who talked about her artwork around IVF experiences, involving photography and intricately embroidered hospital gowns. She accompanied the audience through the experience of various visualising technologies throughout infertility journeys, IVF treatments and pregnancy loss, and she discussed the possibility of trusting or privileging the feeling of a pregnancy through quickening or other embodied sensations, including those of pregnancy loss, over the images produced through medical technologies.
Tabitha Moses, Investment, Tabitha, 2014. Photo portrait by Jon Barraclough. Used here with permission from the artist.
Isabel Davis developed the theme of vision versus feeling in her talk on the history of potential pregnancy. She dealt with the experience of un-pregnancy, meaning the condition of not really being pregnant yet but possibly being, through the work of natural scientist William Harvey on non-generation. Isabel’s talk prompted us to reflect upon ambiguous moments after a non-protected heterosexual intercourse takes place or after an embryo transfer where someone may wonder whether or not a pregnancy has started. These are all important dimensions of reproductive imagination and experience.
The topic of the uncertain time where pregnancy is not (yet) but could be is something Liv Pennington also reflected on when she talked about her artwork on pregnancy tests and the challenges of photographing them on different occasions. Liv’s talk accompanied the audience through her performative artwork Private View, which took place in 2002 and in 2019, and how the performance differed in so many ways between these dates as people’s relationships to pregnancy tests, images and sharing have changed, for instance through the increased familiarity with sharing and commenting on images via social media. Liv reflected on how visualising a pregnancy test result opens up possibilities that may change over time and how this makes her work controversial because of the vulnerability involved in exposing someone’s private reproductive moment while acknowledging the dynamic and uncertain process of pregnancy.
Liv Pennington, Private View, 2006. Used here with permission from the artist.
Funnily enough, technical issues prevented Liv from sharing her slides with the audience, which meant that we relied on Liv’s descriptions of her images, her facial expressions and ability to represent pictures through words. An experience that turned out to be powerful for an event on visualisation!
Nick Hopwood was the last speaker on the panel. His contribution proposed a long-term historical perspective on images of embryos and foetuses to unpack how the ordering of these along a narrative of development has, since the late eighteen century, come to stand for the course of a pregnancy. Nick underlined how images of reproduction produced over the last centuries have overwhelmingly represented a linear process, leaving out experiences of miscarriage or unsuccessful stories of fertility treatment, both of which are frequent ‘events’ in people’s reproductive lives, but underrepresented and thus erroneously considered the exception.
A conversation among all the speakers, with questions asked by the audience, allowed everyone to engage with the common threads or connections among such different approaches to common and less common reproductive images. The conversations highlighted how these images evoke questions of temporality in reproductive processes; how selection and standardisation have been embedded in the use and fruition of images concerning reproduction in the last centuries; and how images have been used for defining normality, normal variations and abnormality. The talks and discussion especially emphasised how a certain production and use of images facilitates the diffusion of dominant narratives of reproduction, leaving out meaningful and relevant experiences, which do not find space in the public representation.
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We are exceptionally grateful to all the speakers and the audience who made this panel so engaging and rich in content. We also want to extend our thanks to the Centre for Public Engagement at Queen Mary and the Being Human Festival for making this event possible.
Keep an eye out for further details about our next events!
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.
