Fertility clinics love to line their walls with photographs of beautiful newborn babies, their “success stories”. IVF has enabled babies to be born to many couples who would not otherwise have been able to conceive. But for every happy couple holding their new IVF baby in a fertility clinic photograph, or featured in the media, there is another story with a different ending.
A recent undercover investigation by the Daily Mail claimed that some fertility clinics are exploiting couples desperate to have children. Women are being persuaded to “donate” or “share” their healthy eggs in return for free or discounted fertility treatment.
Clinics promoting “egg sharing” argue that not only does this provide eggs for infertile women, but also that a woman who has healthy eggs, but not the necessary funds for treatment, gets a free roll of the IVF dice. It sounds like a win-win situation. Except that all too often it is not.
The other side to this was brought home personally to me when the daughter of a friend similarly “shared” half her eggs for someone else’s fertility treatment, in order to have free IVF. She was hospitalised by the procedure and the drugs she had to take. Years later she is still highly traumatised, having been unsuccessful in her own IVF treatment but knowing that her eggs resulted in a successful birth for another woman. She has never had any long-term practical or emotional support from the fertility clinic.
Another woman, Emma Aguado, who also had free IVF treatment that failed, told the Daily Telegraph: “It was devastating. Having given half my eggs to someone else, all I could think was ‘I want them back.’ But it was too late.” She also heard that the recipient couple had a successful pregnancy with her eggs. According to the Telegraph she explained that “Having £5,000 worth of treatment dangled in front of you – incentive far beyond the £750 that clinics are legally allowed to compensate women for their eggs – encourages some to do things they wouldn’t usually consider.”
But my concerns with egg donation go further than the emotional damage to donors. Anonymous gamete donation can also cause a lifetime of heartache for the children born from it, who are denied any information about their biological heritage and their medical histories. The daughter of my friend has a medical condition that has a strong genetic basis which has only recently been diagnosed, so it will not be known to the family that received her eggs, nor to the child that was born from them.
It is more than just ignorance of their medical histories, though. One young donor-conceived woman says: “After my mother told me, she said: ‘All it changes is that we don’t know your medical history. Nothing else.’ I cannot tell you how wrong she was.” On websites such as anonymousus.org, donor-conceived children, who are increasingly speaking up about their experiences, discuss the emotional damage caused by third-party reproduction.
Then we need to consider the physical health of donors and whether the fertility industry is protecting the welfare of women.
The government and regulatory bodies, such as the Human Fertilisation and Embryology Authority (HFEA), do not follow up or track the health of women who have donated eggs, or women who have received donated eggs, or women who have eggs extracted during their infertility treatment, or children who are born of donated gametes. It is an industry seemingly left to its own devices.
We know that in 2010-12 just under half of 864 reported clinical incidents were due to a well-known side effect of fertility treatment drugs: ovarian hyperstimulation syndrome (OHSS), which can be fatal. But there has been little reliable data since then.
In 2013 an independent study of the HFEA, the McCracken Review, was presented to the government. It said that OHSS must be properly managed and tracked. Yet a year later the government admitted that “licensed fertility clinics are only required to report instances of OHSS to the authority that require a hospital admission with a severe grading … The HFEA does not, therefore, hold definitive data on the number of women admitted to hospital with OHSS.”
By 2015, there was still no progress: “The HFEA has advised that it does not hold information on OHSS that would allow it to undertake an analysis of the incidence of hospitalisation due to OHSS.”
The story remains the same today. Reporting of the effects of egg stimulation is via a flawed self-reporting system, so the data is highly unreliable. The procedures and cocktail of drugs used to extract eggs have not been adequately studied, although some research has found a link between ovarian cancer and ovarian stimulation. The only data we seem to be able to obtain is from media investigations, such as a recent Guardian report which cited a 40 per cent rise in hospital admissions with severe OHSS in British fertility clinics in 2015.
Similar concerns have been raised in Parliament by Labour MP Siobhan McDonagh, by leading fertility specialist Professor Geeta Nargund and by the feminist activist Julie Bindel, but seemingly to little avail.
This lack of research and data is highly troubling. Egg donors and women undergoing IVF stimulation need to be aware that long-term research and follow up on their health is simply non-existent. Given this, how is it possible for consent to be sufficiently informed?
Yet concerns about egg exploitation by the fertility industry do not stop there. In the last few years there has been increasing marketing of egg freezing to career women and a resulting rise in the number of women freezing their eggs for themselves or for donation. Yet recent HFEA figures revealed that in 2014, from 948 thawed eggs, there were just nine births. That is a success rate of 0.95 per cent. The price of storing frozen eggs is thousands of pounds, and the price of the extraction procedure is the long-term risk to the health of young, fertile and healthy women.
I cannot conclude without mentioning the research industry that requires women’s eggs for embryo research, including for gene editing and creating “three-parent babies”.
One group of researchers has obtained hundreds of eggs by offering women cut-price IVF and £500 cash “compensation” to donate their eggs for research on creating three-parent embryos. They have used at least 523 eggs donated by 64 women. I worry that such research might create a more costly and serious health burden by using IVF stimulation drugs on 64 women, for the so-called benefit of perhaps one day treating 10 to 20 women a year with mitochondrial disorders.
The fertility industry involves a potent mixture of desperate couples (and single people), a lack of good research and regulation, fears of commercial exploitation and a shortage of its main commodity, human eggs.
There are many things that the Government and the HFEA could do to protect the welfare of women, such as tracking, research, regulation, information provision and clamping down on the financial inducements and advertisements specifically aimed at obtaining eggs from vulnerable young women.
But the real challenge is to find less costly ways to tackle infertility – and I don’t mean cost in pounds. We need to generate demand and provision for ethical fertility treatment, such as NaProTechnology, which is far less invasive than IVF, which is not ethically problematic, which prioritises the health and welfare of women and does not regard their eggs as commodities. We should also strongly encourage adoption which, in view of the small number of babies available for potential adopters, may mean adoption of older children – a highly challenging, if ultimately rewarding option.
In the meantime, until the Government and HFEA are willing to regulate and oversee the fertility industry, it seems that the media has to do that job instead.
Philippa Taylor is head of public policy at the Christian Medical Fellowship
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