Birth of doubt

Sunday Times 15/3/1998

The letter was just one of hundreds that flooded in as the result of a mailshot asking former patients of the IVF Fertility Centre at Cromwell hospital, west London, what should be done with their frozen embryos. But as soon as Dr Kamal Ahuja saw the name at the bottom of the note he recalled the case: one of the clinic’s most cherished success stories.

Two women, sisters, had come to the clinic in 1990, one longing for a child, the other, a mother of two, offering to help by donating eggs. The treatment resulted in the joyful birth of a baby girl.

Now, five years later, came appalling news; the donor sister was dead, the victim of a "nightmare" cancer that began in her lower bowel. Could the drugs administered as part of the IVF treatment be to blame? Ahuja, the clinic’s scientific director, has felt uneasy about the case ever since.

In a report for Human Reproduction, a medical journal, he and a colleague have drawn the evidence together. They cite 60 studies, representing hundreds of cases of cancer reported worldwide that may be linked to fertility drugs, mainly ovarian cancer, the "silent killer" that afflicts 6,000 women in Britain each year.

They also question the wisdom of encouraging healthy women to come forward and act as donors while the long-term risks remain unknown. Donating eggs is uncomfortable, involving injections and invasive surgery, and unpaid (most do not accept the nominal fee of £15 the law allows), yet every year about 500 women come forward. Having children of their own, they are often touched beyond words by heartrending, emotionally charged advertisements that appear in women’s magazines, placed by couples appealing for help.

"Safety must assume priority over all other considerations," says Ahuja. "Our focus is all wrong. We have concentrated on the financial aspects of whether or not donors should be paid rather than looking at the medicine, and we may pay a high price."

Three months ago. fertility treatment was also linked to breast cancer. A French study concluded that the high doses of hormones might accelerate the growth of undiagnosed tumours and two prominent British women have ascribed their cancers to fertility treatment.

Ruth Picardie, a journalist, wrote movingly about her final struggles with breast cancer. She died in September leaving twins, now 2, conceived through IVF. Matt Seaton, her husband, said she "always had a hunch" that the treatment had kick-started a pre

cancerous lump she found before the fertility treatment started.

Liz Tilberis, the former editor of Vogue, who was a close friend of Diana, Princess of Wales harbours a "deeply held belief’ that fertility treatment caused her ovarian cancer. In an autobiography to be published in May, she attacks the reluctance to face up to the possibility that the treatment that gives so much joy to some might also cause devastating damage to others: "I realise doctors prefer hypotheses to be carved in granite before adapting them to clinical practice, but I fear we are writing them in the blood of women whose lives will be sacrificed."

Women undergoing fertility treatment are warned about the risks of ovarian hyper-stimulation syndrome, another rare but potentially lethal side-effect of fertility drugs but there may be other, as yet unrecognised, risks. Donna Holliday, a mother of three from north London, believes that drugs she was given after volunteering to become an egg donor, aged 29, triggered a premature menopause.

"When I was given an initial scan my ovaries were perfectly normal. Yet four weeks later I was having hot flushes," she says. "The doctors said it was just a ‘coincidence’. I just wish someone would take enough interest to find out for sure. If there is a risk, donors should be told."

Like so many others, Holliday decided to become a donor after reading an article about a couple desperate to have a child, and it is this group, mainly middle class, altruistic and highly motivated, that most worries both Tilberis and Ahuja. "It is one thing for a woman to risk her health by pursuing her desire to be a mother," writes Tilberis. "But what about egg donors?"

The use of volunteer egg donors was outlawed in Canada in 1993, when a royal commission decided it was unethical to perform invasive surgery on one person to benefit another without knowing the long-term risks. Nor is it allowed in Israel and Denmark. In America donors are clearly told about the potential risks, including cancer. They are also paid, usually $2,000-$3,000.

Here, the Human Fertilisation and Embryology Authority, which regulates fertility treatment, seems to be moving the other way, preferring volunteer donation to egg-sharing schemes, in which women undergoing treatment themselves agree to donate some of their eggs.

At the Cromwell hospital, women who agree to such donation are treated sooner or at a reduced fee. Ahuja argues that this is an ideal arrangement; giving access to fertility treatment to women who could not otherwise afford it and limiting the possible risks to people who need infertility treatment. The HFEA has its doubts; it regards cut-price treatment or queue-jumping as a payment in kind.

Then there is the psychological cost. What if a woman who donated eggs failed in her own quest to have a child? Would she be haunted ever after with the thought that a biological child of hers might still be out there somewhere?

A consultation paper looking at whether both payment and egg-sharing should be stopped was published by (he authority last month and its guidelines could be altered. Stopping volunteer donations would mean many of the 20,000 couples treated each year would lose their last hope of a baby. Professor

Ian Craft, director of the London Gynaecology and Fertility Centre, said he "could not disagree more" with Ahuja.

"In the back of your mind there are always things you worry about. If you are giving a woman ammocentesis, for instance, is she going to miscarry? But there is no known definite association between fertility drugs and cancer."

Craft’s view is the prevailing medical orthodoxy, but Lynne McTaggart, editor of What Doctors Don’t Tell You, a newsletter, says that though there may be no direct proof of a link, "if you suddenly blast someone with hormones so they super-ovulate you are pressing the accelerator to the floor". The long-term cost of revving the biological engine so dramatically we have yet to discover.

Margarette Driscoll