A new publication is out in the journal Health & Place. The article is entitled Blurring the divide: Navigating the public/private landscape of fertility treatment in the UK and it is freely available here.
In this article, we draw on interviews with IVF patients and their partners to explore how the boundaries between public (NHS) and private fertility treatment provision are increasingly blurred.
Key article highlights:
UK healthcare privatisation has had profound consequences for fertility patients
A new publication is out entitled Patient informed choice in the age of evidence-based medicine: IVF patients’ approaches to biomedical evidence and fertility treatment add-ons. It is open access and available online in the journal Sociology of Health & Illness.
In the article, we challenge the view of IVF patients as willing to uncritically accept or request unproven, expensive treatment as a desperate act to increase their chances of having a baby. Rather, patients are required to make complex treatment choices in a highly commercialised market and an uncertain context of reproductive medicine.
The key findings presented in the article are:
Patients are expected to make informed choices about what additional tests and treatments (add-ons) to include in IVF
Interviews with patients show how they negotiate the notion of medical evidence in relation to their own experience of going through IVF
Approximately half of the patients that we interviewed preferred to delegate the evaluation of evidence to their doctor (or other medical professional)
Yet across the whole participant group, we identified four different patient approaches to evidence in IVF
The patients interviewed described how they would:
delegate evaluations of evidence to experts;
critically assess available evidence;
acknowledge the process of making evidence;
contextualise evidence in their lived experience of infertility.
In June 2021 Manuela Perrotta and I responded to the government’s call for evidence to inform their forthcoming Women’s Health Strategy for England. The government consultation received over 110,000 public survey responses and over 400 written responses. Just before the December holidays, the Department of Health & Social Care published their vision for the Strategy based on the responses received. Reflecting the sentiments shared in the public survey, the department’s vision highlights fertility, pregnancy, pregnancy loss and postnatal support as particular areas of concern. This grouping of priority areas was the second most selected option across all survey participants (after menstrual health and gynaecological conditions), and the most selected priority area for those aged 30 to 39. Infertility and fertility treatment are integral parts of this broader concern with reproductive and maternal health.
The vision document highlights the need for ‘more trusted and easier to understand information’ about women’s health issues, including reproductive health, which is a key point that we address in our written evidence. In our submission we emphasised that there is an abundance of information about infertility and fertility treatments, especially online. But prospective and current fertility patients often find the information difficult to navigate and identifying good quality information can be challenging. We found that our study participants generally felt that NHS websites offered good sources of reliable information. In our written evidence, we suggest ways for NHS websites to expand their remit to cater for fertility patients’ needs. We were excited therefore, to learn that one of the next steps for the Strategy will be to progress the quality of online information in collaboration with NHS Digital. We hope that the needs of fertility patients will be addressed in this continued work. We also look forward to following further developments as well as the government’s dedicated Sexual and Reproductive Health Strategy, which is expected later this year.
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.
We are so glad to have hosted two more workshops on The IVF Experience with such kind and active participants! Natalie Silverman, from The Fertility Podcast, enthusiastically commented on the research findings we were introducing in dialogue with many others in our virtual room. We reflected upon how control can be difficult in the IVF journey, and about the benefits or challenges of sharing one’s experience with other patients during treatment. Some of our participants exchanged ideas about the resources available to fertility patients or donors when it comes to hormonal stimulation and egg pick-up, and they proposed some ways to make these experiences more bearable.
We had an interesting exchange about videos and images of embryos and how these may be received in very different ways according to when, where and how these were shared as well as personal preferences. We especially appreciated how people acknowledged each others’ points of view and how eager everyone was to hear about how research findings can contribute to improving care for patients.
These two workshops were the last of our 2021 public event series. We would like to sincerely thank everyone who has joined us for our events this year. Keep checking back on our Events page for information about our plans for 2022!
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.
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.
During the second week of May the Bush Theatre in London hosted Fertility Fest – an arts festival dedicated to fertility, infertility, modern families and the science of making babies. Organised by Jessica Hepburn and Gabby Vaultier, the event brought together artists, fertility experts, regulators, infertility patients and campaign groups over multiple days to talk about a huge range of issues relating to the modern ‘condition’ of human reproduction. I arrived at the Bush Theatre on Wednesday 9 May and attended again for a full day on Sunday 13 May. With my festival wristband and a schedule of events, I was ready to explore!
Wednesday: There’s ‘more to life’ than having children
Wednesday’s evening event, hosted in partnership with the Fertility Network, revolved around the statement ‘there’s more to life than having children’ and opened with talks by Jessica Hepburn, who introduced her new book, and Jody Day from the support network Gateway Women. These talks were followed by short PechaKucha style presentations (20 slides shown for 20 seconds each) by a range of guests who talked about their ‘plan B’ or personal pathways to accepting unwanted childlessness, from swimming the English Channel, to adopting a dog, establishing a childless-not-by-choice magazine or practicing yoga.
Louise Ann Wilson talked about her project Warnscale, which is a walk through the fells of Buttermere in Cumbria designed specifically for women who are biologically childless-by-circumstance. She emotively described the therapeutic value of immersing oneself in the natural environment and how the embodied practices of walking and mapping the landscape can encourage new opportunities to reflect on life as well as life events that remain elusive, such as the birth of a wished-for child. Wilson commented on the lack of social rituals for women who feel grief for the absence of the life event of becoming a mother and she is currently developing Warnscale to include a walk that explores men’s experiences of infertility. Drawing also on observational research in fertility clinics, Wilson was able to trace parallels between and juxtapose the highly managed process of IVF in the laboratory and cycles of change in nature. Similarly to how reproductive processes and bodies are ‘mapped’ in minute detail through the process of fertility treatment, there is potential for re-imagining this process in/onto/through the natural landscape as a way to make sense of complex personal experiences.
Sunday: Men’s rooms, egg freezing and the awkwardness of language
I started Sunday with a session that focused on men’s experiences of infertility. The title of the session, ‘You, me and the pornstar’, turned into a key point of discussion for the panel with several comments made on how its emphasis on ‘the pornstar’ offered a limited portrayal of men’s experiences of IVF as being defined solely by the task of semen production. This discussion tied in well with Aaron Deemer’s presentation of his art photography project ‘Please make yourself uncomfortable’ through which he documented ‘sample rooms’ or ‘men’s rooms’ in fertility clinics across the UK.
I have never seen a sample room, or ever really thought about them in any detail, but seeing Deemer’s photos and hearing him talk about them emphasised the complexity of these rooms as both designed-for-a-purpose and simultaneously highly emotionally charged, full of hope for success and fear of disappointment, and embroiled with awkwardness. The rooms were all very different – one of them had a chair that looked rather like one you would find at the dentist’s, another was almost bare apart from a black and white poster of the Eiffel Tower, and a third had imposing metal bars across the window. Deemer’s discussion of his photographs drew humorously on the strangeness of these settings but it was also clear that he had found a unique entry point for opening up conversations about much broader questions of masculinity, negotiating a biomedical phenomenon in a culture that assigns value to ‘natural’ procreation and how to articulate the ‘male role’ in fertility treatment.
The session also included a reading of the play ‘The Quiet House’ with an introduction to the play’s background story by its playwright Gareth Farr. The play offers an intimate insight into a couple’s experience of fertility treatment and the effect this has on their relationship and life, with a particular voice given to the male experience of infertility. We only got to hear a snippet of the play, but it touched pertinently on the difficulty for men who feel side-lined in a treatment process that is almost entirely focused on the female body and the hurt of deciding when is the ‘right’ time to stop treatment. Throughout this session a central conversation point was the struggle to re-imagine a life-event that so many assume will happen in the most private and intimate sphere of life, and the associated difficulties of negotiating an unfamiliar, medicalised and highly controlled method of reproduction that takes place in a clinic, a sample room and a laboratory.
Another highlight of the day was the ‘Fertility Fight Club’, where four speakers had ten minutes to talk – honestly and provocatively – about ‘what makes you angry’.
Josh Appiganesi talked about how fathers often seem to be defined by their absence – men tend not to write books or start festivals about making babies and he made a point about how male philosophers have also been tellingly quiet about the experience of becoming a father. He commented on the need for men to talk more about ‘what becoming a father is really like’. Perhaps unusually, a couple of years ago Appiganesi chose to do his talking on camera, which resulted in a documentary film – The New Man – about the ‘ordeal of becoming parents in our era of IVF, late reproduction, and the crisis of masculinity’.
Emily Jackson talked about social egg freezing and the legal time limits around egg storage in the UK. Currently, she explained, eggs can be stored for up to 10 years (with up to 55 years for women who have become infertile due to a medical condition). This means that women who freeze their eggs for ‘social reasons’ (such as not yet being with a suitable partner) have a relatively short period of time to use their eggs. For instance, women who freeze their eggs during their 20s (at recommended peak fertility) are likely to have to use or dispose of their eggs before they are needed. Jackson emphasised how the legal framework, which was designed before social egg freezing was widely practiced, decidedly works against best clinical practice.
Diane Chandler, author of the novel Moondance, was deliberatively provocative in her round of the fight club where she spoke to the question ‘Secondary Infertility: What’s the Problem?’. Chandler argued that primary infertility (wanting but struggling to conceive a first child) and secondary infertility (wanting but struggling to conceive a second/third/fourth child) are not comparable and that trying to start a family is different to ‘trying to complete one’. It is not always appropriate, she argued, that people experiencing primary and secondary infertility share the same supportive spaces (such as online forums) and she presented examples of hurtful comments and competitive language used to make claims about whose grief is worst. In an honest provocation, Chandler made the case for not comparing experiences and emphasised secondary infertility as a different kind of infertility struggle.
Stella Duffy argued ‘Yes I Wanted Children. No I Don’t Want Your Children’ and talked frankly about her own infertility experience of trying to have a child followed by a cancer diagnosis. Duffy stressed the lack of words to describe parents of children who died and extended this inadequacy of words to the language of infertility. ‘There is not a word for us’, she exclaimed, people who wanted to be but did not become a parent are defined by words that emphasise their lack – childless, infertile, non-parent – and the more positive alternative child-free centres on the child as opposed to the person. The English language reflects, Duffy argued, the cultural persistence of pronatal privilege that tells us that it is better and right to have children. There is an urgent need for better words that encompass people who are not the parent they wanted to be but does not define them in terms of this. Echoing many of the other talks, the message was that dialogue follows from having the right, inclusive words – perhaps a task to be revisited at next year’s Fertility Fest…