The dark side of the IVF success stories

Some people involved in IVF feel there is already too much regulation and wimpy dwelling on ethics. They are wrong
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The Independent Online

This is not meant to spoil the party. It is, of course, heart-warming to see the pictures of the enormous celebration marking the 25th birthday of Louise Brown, the first IVF child in the world who was born in Britain into a perfectly ordinary family, that of John and Lesley Brown of Oldham. I remember the historic moment in 1978 well, as my own son had been born that January. When Louise was born, the nation was overawed by the technology that succeeded where God had failed. Professor Bob Edwards and Patrick Steptoe gave the gift of fertility to a woman who had virtually no chance of producing a child, in my view the most affirming of life's experiences.

I understand, too, how devastating it is not to conceive when you are desperate to do so. Years later, when I was trying to have another child and had had two miscarriages in swift succession (third time proved lucky) and was told that there was only a very slight chance of success, it felt as if darkness had descended over my heart and that I could never enjoy life again. And I already had one child. The joy and completion that have been experienced by the approximately one and a half million IVF mothers must be inestimable. And with the science now advancing at such a rate, it is likely that the next 25 years will bring babies to many others, including post-menopausal women who cannot have children at present (unlike men, who can and do become enthusiastic fathers from their late fifties into their eighties). Sufferers of cancer, a growing reason for infertility in the West, can at least hope that they may become parents.

But yet, in spite of the obvious feeling of optimism these tremendous advances can instil in us as a society (the best of science should do this, and we are grateful), I believe that the whole IVF industry is in need of much more dispassionate scrutiny, and ought to be subject to continuous assessment and tough questioning.

I have met a number of the top doctors involved in the field - top in the sense of being high up in the league tables that count the number of live births - and I have tried to speak to others, and they seem to see themselves as powerful pioneers. Indeed, they are people who do not expect to be investigated, interrogated or even politely interviewed. Even Robert Winston, with his deservedly excellent reputation, obviously felt recently that it was not worth his time engaging with my inquiries as an interested journalist.

I have talked to other practitioners who believe both in this progress and in greater accountability. I have visited clinics and discussed my concerns with past and present heads of the Human Fertilisation and Embryology Authority (HFEA), and I have found much too much caution and, surprisingly, some ignorance about what is really going on. The authority has to become much more vigilant as we navigate ever more morally perilous, if scientifically exciting, territory.

It is interesting to note that almost all the big names in this business are male. I found only four women IVF doctors, and two of them agreed that the inordinate power of some practitioners was making proper regulation almost impossible. Embryologists and other specialists have, off the record, told me that many disallowed techniques were being used in some clinics, and that this information was concealed during HFEA inspections.

The amount of IVF treatment has risen by 105 per cent in 10 years, and there seems to be a growing belief that babies can be tailor-made to order as long as you have the money. Too busy? Have your eggs frozen. Time, ageing, infertility, these can all be manipulated. People go into debt for years to pay for treatments, and private clinics are making millions, and as yet only a tiny number of couples get treatment on the National Health Service - a scandal, really.

I now have a thick file of interview notes with IVF clients, many of whom say that they feel badly let down. One mother who contacted me said that she travelled to Spain for treatment after trying the famous private clinics because she felt that what we have in this country are assembly lines with hardly any help to cope with the emotional fallout. Blissfully happy parents were as often critical of the system as were those nursing broken dreams. They were scathing about the commercialisation, ruthless speed, motives and lack of care during and after procedures.

Failure rates for IVF are still high - only one in four conceives. Those who go through physical trauma (the process is invasive and physically destabilising for the woman) only to end up with no babies... you can imagine the psychological damage that such a process can inflict on the patient. However, multiple births, or "selective abortions" to prevent the birth of quads or triplets, bring other internal traumas, but they represent an issue that IVF clinics often can't be bothered with.

In the US, the number of twins and triplets born to women in their forties has shot up, a development that is bringing real health risks to the mothers and to their children. The most shocking development, though, concerns poorer women who agree to hand over their eggs after one or even two stimulated cycles in exchange for reduced-cost treatment. If they then can't subsequently conceive, they have done their job - enabling the clinics to process some other woman. Until recently the HFEA did not even know that this was going on.

The intimate relations between couples can suffer too, according to Joan Raphael-Leff, a psychoanalyst. When "normal" sex has been on hold, there are psychosexual problems that can arise. If both partners don't share the same degree of longing for a child, their relationship can fall apart when the baby is born.

Then there is the science itself. Suzi Leather, the chairwoman of the HFEA, told me that in the US and in this country there is a concern that with some techniques commonly used for IVF (where the sperm is injected into the egg, for example), the DNA may be altered and some of the children may be found to have chromosomal abnormalities. In New York, a doctor is currently mixing two eggs, that of an older woman and a younger woman, with the aim of "improving" the genetic material. Meanwhile, research is starting to emerge showing that Leather and others may be right to worry about the disabilities that we may yet find in many of the apparent success stories that are pinned on every wall of every clinic in the country.

Yet some feel that there is already too much regulation and too much wimpy dwelling on ethics. They are wrong. Science and money, the furious and impatient twin drivers of IVF, will only be stopped and the practitioners of IVF persuaded to go more carefully if ethics intervenes and if there is a bolder regulator who is not afraid to take them on. Nobody has a right to a family whatever the cost. We are lucky that we can try when the odds are stacked against us, but in the end we must take care that we do not ruin more lives than are made in the name of progress.

y.alibhai-brown@independent.co.uk

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