A matter of life and death

Suzi Leather, new head of the human fertility and embryology authority, talks to Sarah Boseley about making tough choices that affect desperate women

If there is a god of babies - a capricious deity who decides who will bear a child and who will not - then some might call the head of the human fertilisation and embryology authority its proxy here on earth. No doubt Suzi Leather, the new HFEA chairwoman, would hate to be accused of playing God, but it is a complaint she hears a lot. If it's not a couple denied permission to have a "designer" baby to save the life of an existing child, it's the test-tube baby clinics that want to put multiple embryos into a woman's womb in the hope of increasing the chances of pregnancy. If it isn't either of those, it will be the scientists who want to experiment on unwanted embryos, or the pro-life groups that call them murderers.

Leather has to hold the ring. In this job, she can take nobody's side. She is a regulator, who has to balance one woman's tragedy against another's ethical convictions. And as she points out, childless couples are no longer the only consumers of fertility techniques - she must also deal with scientists eager to advance medical science and save lives through the use of embryonic cells.

It is a minefield. You have the sense that she has already recognised the delicacy of her position and the dangers of the outspokenness for which she has had a reputation in the past. She weighs her words, thinks through her answers and says only what she intends to say. One of her recent remarks - "There is more to life than having children" - immediately made headlines. In truth, it was hardly outrageous: she meant that women should not rush into motherhood if the time and the partner are not right. Behind her words lay concern for the many women who will be failed by the miraculous laboratory tricks of IVF and have to make a life that does not involve bearing a child of their own.

"We aren't just parents. Even when we are parents, we aren't just parents," says Leather, 46, who has three school-age children of her own. She says it is important to bear in mind the success rate for IVF. Even with the recent improvements for the under-38s, a woman still only has a 24.1% chance of a successful pregnancy. "It still means that three- quarters aren't getting pregnant. Three-quarters are going through all that distress, expense, discomfort and waiting and at the end of it, they are not pregnant.

"Sometimes they will get pregnant with successive attempts, but for a small number of people, it will never be successful. So what are we going to say to them if we define ourselves only by our being parents?"

There's a cultural problem here, and Leather acknowledges that the existence of IVF has made it harder for people to live with childlessness. Some cannot accept that it won't work for them.

Hers is a tough job because many of the decisions she will make or sanction have a great impact on desperate and distressed women. And although her instinct, from her national consumer council background, may be to champion their cause, as a regulator she can only try to make things fairer for them.

Some people think it is profoundly unfair that fertility treatment is rationed on the NHS. Other countries are more generous. In Scotland, for instance, women are entitled to one free cycle of treatment. Many poor women, who were never interested in a career and expected their lives to centre around their children, cannot afford £3,000 for one cycle of treatment. Some end up bankrupting themselves - and their marriages - when IVF fails again and again.

"It's not up to me to make decisions about NHS resources," Leather says carefully. "What we spend on infertility treatment would have to come off somewhere else. But I don't see why infertility is different from other areas of health care. It is itself the result often of disease processes and the distress is the same whatever income group you are in. There is a difference in access, and that is unfair."

What she can do for women - and she clearly intends to - is tighten up controls over the clinics. She intends to bring into line the pantheon of demigods of infertility - the doctors who inspire awe and adulation as the creators of babies in the very teeth of nature. Success rates for different fertility treatments vary widely between clinics. There are suspicions that some make their own rules. The HFEA says that no more than two fertilised eggs should be implanted in a woman's womb, but the high rates of multiple pregnancies - which increase the health risks for mother and babies - suggest that some doctors think they know better. And some clinics are thought to improve their success rates by picking only younger, healthier patients, whose chances of a baby are higher.

But the baby doctors will not be an easy bunch to tame. Some of them are high-profile, outspoken, pioneering and genuinely think they know better than the HFEA how to increase the chances of a woman securing that longed-for child. Leather says she is going to "keep an open mind" on whether the HFEA should rule that only one embryo be returned to the womb, as in parts of Scandinavia. There, where much more generous fertility provision is offered, the rate of successful pregnancies has not dropped as a result. But some doctors say that reducing the number of embryos drastically slashes the chances of motherhood for older women, and there are increasing numbers of those walking through the clinic doors.

In her mission to tame them she has been dealt a strong hand - albeit through the misfortune of others. The shocking mix-up at a clinic recently, which resulted in black twins being born to white parents, is clear evidence of the need for closer inspection.

"I think that good regulation is in the interests of patients and the clinics," says Leather. "I think it's misguided, particularly in an area which is as sensitive and important in its implications as infertility treatment not to have very good regulation. I think we need to professionalise our inspection. We need to up our game in our responsiveness to clinics and to patients. This is not an ordinary area," she adds with determination. "Good enough regulation is not good enough."

But why does she even want the three-day-a-week hot seat at the HFEA when she must surely have enough to do in her other two days as deputy head of the food standards authority? She says it combines a lot of interests - her consumer background, and her work in health as chairwoman of an NHS trust and as the founder of the government's first healthy-living centre. But the biggest attraction, one senses, is the chance to mediate and rule between the public and the scientists. She can help shape the ethical framework within which science moves forward.

Leather is not new to controversy. She was involved in the debacle over genetically modified food. "I was representing consumers on food policy in the 80s and 90s and seeing how GM was particularly badly handled by industry, but I think that government should have handled it better. I think we have made a mistake in the past when we haven't clearly enough set out what the costs and benefits are of different scientific advances. I think the public are very good at making up their minds and deciding these issues, but we need an open debate about what the up sides and the down sides are."

This kind of open public debate notoriously hasn't happened over the use of embryos in scientific research. Vested-interest groups slug it out, but the public are left bemused. How many people, for example, understand why Shahana and Raj Hashmi were allowed to have tests on their test-tube embryos in order to try to have a baby whose genetically matched umbilical cord blood would save the life of their sick two-year-old son, and yet Jayson and Michelle Whitaker were not?

The aim of the two couples was the same - to save their existing child from long-term illness and premature death. But the Human Fertilisation and Embryology Act says that preimplantation genetic diagnosis (PGD), in which a cell of the embryo is removed and tested for genes that will lead to a specific disease, can only be used where there is a chance that the resulting baby will have a dangerous hereditary condition. The Hashmi baby would have been at risk of the condition that his brother Zain could die from - thalassaemia major - but the Whitaker baby was at no risk of a different rare blood disorder afflicting his three-year-old brother Charlie.

Were the right decisions made in these two cases? Leather bites her lips, looks into the distance and says nothing for a long time. "Yes," she says finally. "They were very difficult decisions. I don't think in reviewing decisions it is so simple as to say that this is the only decision we could have made within the law. I think you have to step outside it and say in that case is the law right and what are the criteria by which we judge the law.

"I think in an area like this, in order to be fair to people you have to have certainties. You have to have a legal framework. But I don't think you can say that legal framework will always be immutable, because the science and technology are changing so fast."

PGD will doubtless be the focus of many more hard cases and hard choices. Leather hopes that the public can be brought into the debate so that the decisions reflect more widespread opinion. If most people think that it is morally acceptable to save a child's life by having another baby, as long as that baby will be loved just as much, then there must be a case for changing the law. But opponents will undoubtedly once more bellow "designer babies" - a tag that destroys all the nuances of the debate.

Not everyone would envy Leather her job. And how does she manage to combine two surely fraught and difficult positions with the motherhood of three children, aged 16, 14 and 11? She smiles. She get extraordinary support from her partner and children, she says. She also thinks it made a difference that her mother worked when she was young, as a doctor and psychosexual counsellor.

"I knew as a child growing up that my mother had a public life," says Leather. "I think lots of women do lots of different jobs, whether home or work. I think the real difficulty comes at the bottom of the income spectrum where you are often doing several jobs just to feed your family. Those are the women who are up against it - not me."

Contributor

Sarah Boseley

The GuardianTramp

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