Dr Zeynep Gurtin (UCL EGA Institute for Women’s Health) discusses her analysis of the UK’s 15 largest fertility clinics which offer egg freezing, warning that in general they provide a poor standard of information.
The current prolonged uncertainty about the future has exacerbated the concerns that many single childless women - especially those in their mid-30s - were already reporting, including anxieties about the ticking of their biological clocks and fears over age-related fertility decline.
Sarah, a 36-year-old HR manager who recently came out of a four-year relationship, feels the pandemic could not have come at a more costly time in her personal life. She told me: "I have this constant underlying worry that by the time this all blows over and I can finally meet someone, I might have missed the boat to become a mother."
It is easy to see why women like Sarah might opt for egg freezing. Yet while this technology can certainly be useful for some women, new research reveals that it may not always be as straightforward as it appears.
Many aspects of egg freezing have been discussed in the media, yet to date, there has been almost no attention paid to the ways in which fertility clinics advertise, market and promote their egg freezing services on their websites, and the quality of information that is available to potential patients considering their options.
In order to address this gap, my colleague Emily Tiemann and I analysed the websites of the UK’s 15 largest fertility clinics offering egg freezing. Our recently published findings make uncomfortable reading.
Our research suggests that fertility clinic websites in the UK, taken in general, provide a poor standard of information and, we argue, need to be urgently improved, for reasons of both medical ethics and consumer rights. Of course, as websites are dynamic entities some of them may have already improved or changed since we took our "snapshot" (in June 2019), but our findings nevertheless raise concerns for potential patients.
We found that most of the clinics we looked at presented what we believe is an unbalanced view of egg freezing on their websites, highlighting its potential benefits and failing to adequately discuss its potential risks. Clinics’ websites were also not sufficiently clear and transparent about the cost of an egg freezing cycle, with the average "true" cost exceeding the advertised costs by approximately a third (on average an additional £923).
Finally, we came to the view that clinics did not always provide accurate data or success rates. In fact, of the 15 analysed, we only rated one clinic website as "good" in terms of its quality of information.
We reached out to all 15 clinics for comment. Harley Street Fertility Clinic responded:
We welcome the Gurtin and Tiemann paper because it aims to improve the quality of information provided to patients. However, we do not necessarily agree with all the metrics and indicators used by the authors as part of their review [...] As a clinic, we strive to be clear and transparent in our communications. Hence, we will use the suggestions made in the paper to improve our communications with patients.
IVI Midland responded by pointing out that since 2019, the clinic had been acquired by CARE Fertility and therefore the website we analysed is no longer active. CARE Fertility, meanwhile, replied:
The number of egg freezing cycles we carry out is very small, and as success rate data is only available once a woman returns for fertility treatment (often many years later), we have even less success rate data [...] At the time of the study in June 2019, the egg freezing page of our website could have more clearly explained the costs involved with egg freezing, but we have since updated the page to further help patients access the information they need.
The other clinics we approached for comment did not respond. But it is welcome news that some have been working to improve their website content.
We have issued an urgent recommendation for clinic websites to be improved, but it is difficult for the Human Fertilisation and Embryology Authority (HFEA) to enforce such changes when much of the economic or commercial aspects of fertility treatments fall outside its remit.
But the issue is pressing, since we contend that the lack of good quality information compromises the ability of women like Sarah to make truly informed decisions, and leaves them inadequately informed or misinformed about crucial aspects, such as costs to plan for or potential risks to weigh up.
Justine*, a journalist who lives in London, froze her eggs two years ago, aged 38. She told me that although she went to some lengths to research the technology, she still felt unprepared for the reality of how it would feel to freeze her eggs.
Justine found herself in considerably more physical discomfort than she had expected, feeling bloated, uncomfortable and in pain despite having been told she would be able to go about her normal life before the procedure. Her physical discomforts continued and even worsened after egg collection:
As the hours passed, I still felt incredibly weak, bloated and short of breath. I called the clinic who just said if you continue to feel bad, then go to A&E. It was at that point I felt very alone.
She felt that the clinic had relinquished all responsibility. "I went to A&E and was admitted overnight, with a series of tests and observations confirming that I had OHSS," she said.
While Justine was unlucky to suffer from ovarian hyperstimulation syndrome (OHSS), a rare complication of the IVF and egg freezing processes caused by the production of too many eggs, she felt she lacked information about this potential risk and that the clinic didn’t offer adequate follow-up care.
Patients or profit?
The fertility industry is becoming increasingly commercialised, a consideration that is particularly pertinent in the case of egg freezing, which takes place primarily in the private sector. This is an aspect that Lucy van de Wiel, a researcher at Cambridge University’s Reproductive Sociology Research Group, focuses on.
Her new book, Freezing Fertility, draws attention to the potential conflicts between clinical decision-making or patients’ best interests on the one hand and business and profit motives on the other. Market forces in the fertility industry, political interests underlying regulations, and age-old cultural narratives of gender and motherhood play a role in our reproductive decision-making.
Given this, I would urge women considering egg freezing to look beyond the information on clinic websites. In particular, women may wish to ask clinics for specific and verified data regarding the number of cycles they have performed each year or their success rates.
They may want to ask questions about exactly what is and is not included in advertised pricing, and to consult the HFEA website for an unbiased discussion of the benefits and risks of the technology. It can also be extremely helpful to discuss egg freezing with others who have been through the process, to gain a realistic impression of what it involves.
Despite her difficulties, overall Justine feels "a sense of comfort" knowing that she has frozen eggs in storage, but she does offer a note of caution:
While the process is presented as being fairly straightforward, it does have powerful physical, emotional and psychological impacts so it is important not to gloss over it as a ’procedure’ and make sure you have support available.
*Name and identifying details have been changed.
This article originally appeared in The Conversation on 01 February 2021.