Biomedical imaging technologies, professional and lay visions

Tag: Conferences

PET’s annual conference: The current state and regulation of the fertility sector

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

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

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.

Better regulations or no regulations? Thoughts on PET’s 2018 conference

The annual conference of the Progress Educational Trust (PET), ‘Make Do or Amend: Should We Update UK Fertility and Embryo Law?’ could not have been more timely. Held at the beginning of December, it shortly followed emerging reports from China that the first gene-edited babies will soon be born. While attendees did not miss the opportunity to discuss these developments, the conference provided food for thought for anyone interested in the legal aspects of fertility and reproduction.

The general sense in the room was that the law can hardly keep up with technological developments in this area. As many speakers brilliantly argued, this can lead to problems and frustrations when trying to apply old laws to current contexts. Professor Emily Jackson underlined the issues faced by UK patients as a result of the 10 year legal limit on embryo storage, while Dr Kylie Baldwin highlighted similar issues experienced by women undergoing egg freezing for social reasons. Additionally, the law can be especially restrictive for families who conceive through donation and surrogacy. Both Natalie Gamble and Natalie Smith did an excellent job of underlining changing family practices.

I was especially struck by the diversity that exists within European fertility law. Oftentimes, regulations cannot be separated from the ethical and religious context of their respective countries. This was especially evident in Professor Robert Spaczyński’s presentation on reproductive laws in Poland and Professor Christian de Geyter’s overview of assisted conception in Switzerland. Giving attendees a fascinating picture of the larger European landscape, Satu Rautakallio-Hokkanen, the Chair of Fertility Europe, walked us through many differences between legal restrictions in assisted conception and services offered in various countries across the continent.

For me, a crucial question emerged during the discussion: why is this area of medical practice as regulated as it is? Some have argued that we are talking about procedures that should not even be within the purview of the law. Others might think that we just need better laws, instead of getting rid of them altogether. It is clear, however, that for the time being, fertility and embryo law remains contentious. Consequently, we need to have these debates and conversations in order to find the best solutions. PET’s event made me reflect on bigger questions than the ones I had going in. I had no doubt that better regulations are needed. Now, I wonder, however, about legal systems’ inherent limitations and whether such institutions have the adequate means to cope with rapid changes. Should certain procedures remain unregulated? I have not yet decided on my definitive views, but I’m glad these conversations are happening.

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.

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