Category: Conferences Page 1 of 2

On 13th December 2021

In Conferences, News

At the beginning of December, we kept up our tradition of attending the Progress Educational Trust’s (PET) annual conference. The title and topic of this year’s online event was ‘Reproducing Regulation: Who Regulates Fertility and How?’ With 16 talks across the full day, I have chosen just a handful here that I thought were particularly pertinent to the issues that we consider in our research.

The first speaker of the day was Julia Chain, chair of the Human and Embryology Authority, who had made headlines in the run-up to the conference with her call for changes to the 1990 Human Fertility and Embryology Act. Her proposed changes would enable the HFEA to impose economic sanctions on fertility clinics that mis-sell unproven treatment add-ons. While she emphasised that her call was not a complete rejection of the current regulatory framework, she highlighted the need to update certain areas of the act to reflect the current state of society and the fertility sector. Currently, she noted, the HFEA has no powers to regulate the increasingly commercialised provision of services. Private fertility treatment is increasingly the norm in the UK, with 65% of IVF treatment being self-funded by patients themselves.

Reflecting on the commercialised fertility sector, Raj Mathur from the British Fertility Society brought attention to questions of fairness and equity and the lack of NHS funding for fertility treatment. Many prospective patients, he reminded us, do not have any access to IVF and when they do, affordability is a huge cause of concern. Mathur spoke about the challenges for patients who have to navigate very complex regulations around the provision of funding, before they even reach the point of having to choose between different treatment offerings.

A significant challenge to regulating the fertility sector is the fast pace of innovation. In her talk entitled ‘What is an add-on, and who gets to decide?’ Anja Bisgaard Pinborg, a specialist in reproductive medicine at Copenhagen University, detailed the difficulties of regulating add-ons safely without stifling the progress of medical research. She explained how the European Society of Human Reproduction and Embryology (ESHRE) is working on a new guideline for regulating add-ons. This guideline includes a very extensive range of tests, treatments and techniques, which reflects the vast and complex offerings of the fertility sector. While Bisgaard Pinborg recognised the obligation of clinics to offer the best treatment to their patients and the strong desires that patients may have to try certain (perhaps more experimental) treatments, she also highlighted that patients should never bear the cost of innovation. Patients, she argued, should not pay for add-ons that are still under development. How fertility patients and professionals navigate the complex world of IVF add-ons is something we have covered extensively in our research publications, workshops and in this blog post on how to best support patients’ informed decisions.

Further examples of how the law and regulation lag behind change were raised by Emily Jackson later in the day. Jackson set out how definitions of ‘mother’ in UK fertility law do not easily apply to the new social and family formations that are enabled though reproductive technologies. Currently, the legal definition of mother is defined in terms of who physically gives birth to a child. One of the examples presented by Jackson involved the case of a child that has two female parents at birth. In this case, the person who gives birth is the mother and the partner is the second legal parent. This is also the case when the partner’s egg was used in the IVF treatment. Interestingly in this case, as Jackson pointed out, the second parent is actually the child’s closer genetic relation. Fatherhood on the other hand, is expressed in both genetic and social terms, which allows for greater flexibility and choice in how fatherhood is defined.

Again, this year’s PET conference succeeded in traversing a wide range of perspectives on the most pressing issues confronting the fertility sector right now.

Nordic STS conference 2021

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

On 16th December 2020

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.

IVF babble online fertility expo

On 20th July 2020

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.

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

On 17th December 2019

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.

Researching reproductive technologies: Notes on our summer and progress so far

On 27th September 2019

In Conferences, Events, News

The RHB team had a productive summer with amazing conferences and manuscript writing. Having received so much useful feedback as of late, we are ready to publish some of the first project findings. The conferences we attended in the past months have really helped us contextualize our research and hone our arguments.

In August, RHB was at the annual meeting of the American Sociological Association, where we were part of one of the five (!) Sociology of Reproduction panels. Given that RHB is UK-based, we were able to assess how the issues raised in our research relate to wider concerns regarding technology, medicine, and reproduction. Although the UK IVF conversation has lately involved a sustained critique of commercialisation, audiences have remarked that the industry here is quite tightly regulated when compared to other countries (the U.S. especially), where healthcare is largely driven by a strong consumer logic. This is particularly true of fertility treatment, where multiple IVF cycles can cost tens of thousands of US dollars. As reproduction researchers, however, we strongly feel that fertility care should be an integral part of public healthcare services for all.

The ethics of new biomedical technologies was the focus of the first of our two panels at the 4S (Society for Social Studies of Science) meeting in late summer. Here, scholars raised excellent questions about the introduction of new medical technologies and the value they add to practice. As we have grappled with the role of time-lapse in IVF, we have found that the meanings of this technology can be different depending on one’s position and perspective. For example, time-lapse can be a great lab tool for embryologists, while also a reassuring technology for patients who want to know that their embryos are kept in a stable environment 24/7. This is an aspect of time-lapse that our audience has found incredibly interesting.

We have also recognized in our presentations that efficiency evidence is currently an important criteria for assessing new IVF technologies, especially in the UK add-on conversation. Based on our findings so far, this is one of the most salient themes that arises when talking to professionals about the value of new treatments. In the near future, we aim to publish our data on how fertility professionals in the NHS conceptualise evidence and its relation to time-lapse tools. In the meantime, we are also working on finishing up data collection, so that we can share findings on patient perspectives as well in the coming year. Last but not least, planning for public engagement activities in underway, with several events that will take place in 2020. Stay tuned!

British Sociological Association Human Reproduction Study Group Annual Conference 2019

On 20th June 2019

In Conferences

Last week we were delighted to attend the BSA Human Reproduction Study Group Annual Conference, held on June 12 at De Montfort University (DMU) in Leicester. During one of the late afternoon sessions, Manuela Perrotta (pictured below) presented our paper-in-progress on professional attitudes towards the role of evidence-based-medicine (EBM) in IVF. The presentation emphasized the case of time-lapse and the role EBM has played in its uptake. The conference included a thought-provoking plenary from Prof. Marcia Inhorn as well as excellent panels on gamete donation, reproductive genetics, donor conception, reproductive timing, and abortion. Many thanks to the Centre for Reproduction Research at DMU and convenors Dr Kylie Baldwin and Dr Cathy Herbrand for the warm welcome.

Remaking the Human Body at the BSA meeting

On 30th April 2019

In Conferences

One of our most anticipated events this year was the British Sociological Association (BSA) meeting, held between April 23 and 26 at Glasgow Caledonian University. Manuela Perrotta presented new findings from our project, focusing on the role of evidence-based medicine (EBM) in IVF. Our paper analysed professional attitudes towards time-lapse imaging technologies and how they illustrate a very ambiguous and complex relationship between reproductive medicine and EBM. We did not miss our chance to catch up with current research in our field and attended several medical sociology and STS (Science and Technology Studies) streams. Moreover, the team enjoyed excellent plenaries, including Nonna Mayer on voting and social precariousness and Satnam Virdee on race, otherness, and modernity. BSA 2019 provided excellent content and food for thought. We are excited to see what the next year brings.

QHRN 2019

On 26th March 2019