The gift of life

Somebody has to choose which women should have IVF treatment and which should not. But who?
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The Independent Online
Jane Smith had been trying to get pregnant for three years when she went to see one of the world's leading fertility experts, Professor Robert Winston, at the Hammersmith Hospital in London. She wanted to inquire about in-vitro fertilisation.

She was in a stable relationship, in excellent health, with a good job and lived in a comfortable house in north London. Everyone thought she and her partner would make ideal parents. The only thing they needed was a child. Unfortunately she was 41 years old.

"When I saw Professor Winston, he did not do any tests or anything. He just said, in a very cursory way, that he was sorry, but that he felt, at my age, I should not be considering in-vitro fertilisation. He said that if I wanted a child, I should get some counselling," Jane Smith (not her real name) said.

"That was it. The whole thing lasted about five minutes. He did not measure my hormone levels or anything. I thought to myself, if I had been a different person, he would have had a very destructive effect."

The encounter, although 10 years ago, is engraved on Jane's memory, so she was astonished to read last week that the same doctor (now Lord Winston), who had refused her therapy, had agreed to provide IVF for a woman who was HIV-positive. The woman, in her thirties, who is a former drug addict, is thought to have caught the virus from her former boyfriend who has been positive for 10 years (the average length of time between infection and development to full-blown Aids). Her life expectancy is considered poor and there is a 10 to 15 per cent chance that she will pass the infection on to her child.

Jane was scathing in her criticism. "It is extraordinary that Lord Winston is willing to treat a woman who, according to all the statistics will be dead within five years, yet he was not willing to treat me."

She is not alone in feeling that IVF treatment is a lottery. Many patients feel that doctors in this field make capricious and arbitrary decisions, on a whim, without reference to anyone but themselves. Hence the frequent accusations that they "play God". Post-menopausal single women and lesbian couples seeking IVF treatment get a different reception in different parts of the country; while many couples who cannot afford private healthcare get no treatment at all.

Lord Winston's decision to offer IVF to an HIV-infected woman - revealed in BBC Television's Making Babies programme last week - has provoked heated debate. In some quarters, the doctor was instantly canonised; in others, he was demonised.

Tim Hedgley, of Issue, the National Fertility Association, defended Lord Winston and said the public had double standards. "He is right because he is working on a basic principle, that someone with a medical condition, in this woman's case infertility, is entitled to treatment. If this woman had Aids and was refused treatment, there would have been an outcry."

But Adrian Rogers, a GP and director of the Conservative Family Institute, disagreed: "These doctors are architects of a bizarre society where, out of the patient's selfishness and the doctor's collusion, we create deliberately disadvantaged children. When this child's mother dies, the doctor should get the bill for the child's upbringing."

The debate reflects a dilemma for medicine and for society. In-vitro fertilisation has been around for almost 20 years, since the birth of Louise Brown, the world's first test-tube baby, in 1978. Because fertilisation takes place outside the human body, it has enabled women to give birth to babies who are not genetically either theirs or their partner's - if they have a partner at all. Medicine, and society at large, have still to come to terms with the ethical questions that this issue raises.

Not only do we not know where to draw the boundaries determining who should be entitled to treatment and who should not, we are not even clear about how or by whom those boundaries should be drawn.

Should a lone doctor have the right to decide who should get treatment and who should be denied it? And when he is considering his decision, should he only follow his own conscience or should he try to reflect society's views as a whole? Should doctors be forced to take all contentious questions to their hospital's ethics committee and be made to abide by their decisions?

In principle, the ethics committees, which include lay representatives, are there to help doctors with these questions, but many hospitals still do not have them and even where they have, it is often not clear how far doctors should use them.

Dr Anne McLaren, a member of the Human Fertilisation and Embryology Authority (HFEA), the statutory agency that licences hospitals to conduct IVF treatment, says that doctors do not have an obligation to get approval for their decisions from their ethics committees because IVF is a clinical treatment, and not a research procedure.

"But I think doctors should discuss difficult cases with their centres' ethics committees, listen to what they say and feed their views into the decisions of the team," she said.

The HFEA believes that the chief criterion for deciding whether a patient should be offered treatment should be the "welfare of the child". This is codified in law. The Human Fertilisation and Embryology Act (1990) says: "A woman shall not be provided with treatment services unless account has been taken of the welfare of any child who may be born as a result of the treatment."

That may be the law, but in practice many other criteria come into play. The two most important are the likelihood of the treatment succeeding and the willingness of a health authority to pay for it. In Jane Smith's case, Lord Winston refused her treatment on the grounds that it was unlikely to succeed, a decision he defended last week.

"Up to 1985, there had not been one IVF pregnancy achieved in anyone over 40. I think my decision was entirely justified. But we have not turned away anyone in their early forties for years. In fact, 25 per cent of our patients are now 40."

Many other patients are turned away because their health authority refuses to pay for treatment. Katrina Cooke, a 33-year-old legal secretary from Colchester, Essex, and her husband, were told that there was no NHS service available in her area, so she had to go privately.

"I do get angry when I think how other people can have sterilisations, abortions, vasectomies, vasectomy reversals and even sex-change operations on the NHS," said Mrs Cooke.

Some health authorities have decided to set an upper age limit for treatment, usually 35 or 40, to maximise the number of pregnancies that they achieve for their investment - to get the most bangs for their bucks.

But even if the chances of success in IVF were higher - greater than the present 15 per cent take-home baby rate - and even if resources were limitless, difficult ethical questions would still remain. The obligation on a doctor to consider the welfare of any child born as a result of treatment is open to widely different interpretations. How can a doctor predict and judge a child's future quality of life?

Doctors in the field, for example, disagree strongly about the wisdom of treating an HIV-infected woman and about the life chances of any child born to an HIV-infected mother. Last week I approached doctors at four centres and asked if they would have provided the treatment, as Lord Winston did. Three centres said that they would definitely not treat such a case, and staff at the fourth said only that they would have considered it. And none of the four had knowingly treated such a case in the past.

Simon Fishel, scientific director of the Nottingham University Research and Treatment Unit in Reproduction, said: "We would turn down such a case. Given that there is a chance that the child might catch HIV, I could not be a party to that child's demise, as a result of that condition, in the first 10 years of its life."

If there was no risk to the health of the child, then it would have been different. "I would proceed if it were only a question of the mother's short life expectancy. We are faced with cases where one or other parent may not have a normal life expectancy about once a month and we often treat such cases.

"We have had cases of women with renal disease, for example, where they might have had a 50 per cent chance of being alive in 10 years' time. We take the view that, if they would have had a baby without IVF [ie if they had not had a fertility problem], then what right do we have to stand in their way?" Dr Fishel added.

Bert Stewart, scientific director of the Midland Fertility Services, gave a quite different reason as to why he would turn down such a case: "We would not treat anyone who is known to be HIV-positive, 80 per cent because of the risk to staff and 20 per cent because of the moral dilemmas. The equipment you need to protect laboratory workers is very expensive and elaborate and makes carrying out the procedures more difficult."

A less hard line was taken by John Parsons, senior lecturer and honorary consultant in charge of the assisted conception unit at King's College Hospital, London, who said that he had doubts, but could feel them softening.

"The child will have to see its mother die, and die an unpleasant death, but we do, however, occasionally treat patients who are terminally ill. I would tend to say that if the chance of the child being infected was low enough, then you could treat the mother. But are they in fact low enough yet?"

Only Robert Foreman, clinical director of the London Gynaecology and Fertility Centre, said that they would consider it. "We do not have a blanket refusal for any category of patient. Our policy is to assess every individual on their merits."

But deciding whether a woman with HIV should be treated is only one of many different ethical dilemmas now confronting doctors in this branch of medicine. Mr Parsons has been faced with some difficult quandaries. In the past few years, he has had to consider whether to treat a couple where the man had terminal cancer; a couple where the woman, now 30, had had three children taken into care in her early twenties and had now found a new partner and "sorted out" her life; a couple from Uganda, who were at high risk of HIV, but who refused to be tested; and a couple where the man was a former heroin addict still taking methadone.

Mr Parsons's solution is to discuss these cases with his ethics committee. "There is nothing like a jury. I would not have the confidence to decide the questions on my own. I have never gone against the decision of my ethics committee, but I am not shy of arguing my case vigorously with them and going back again and again, when I feel someone should be treated."

So how does Lord Winston himself view the public response that has greeted his decision? He is unrepentant, if astonished by the uproar. "We treat people all the time who are going to die. Sometimes we do not know they are going to die; sometimes we know that they have a higher risk than other people.

"One of my parents died when I was very young. Perhaps if someone had known then that that was going to happen, they would have said that I should not have been born. How can we predict what the life of a child will be like, given the vagaries of human life?

"I think the prospective father in this case has some rights. The father, who is not infected, has been using safe sex so that he does not get infected, wants a child by his partner, whom he loves very much, and is prepared to bring it up, in the event of her death. He feels his rights are being imposed on if the couple are refused treatment."

Lord Winston added that some people were surviving a long time with HIV. Some prostitutes in Africa, for example, had lived for 12 to 15 years with the virus. There was also no evidence to suggest that becoming pregnant hastened the progression from HIV to Aids, as some doctors had thought in the early days of the disease.

Moreover, there were steps that patients could take during pregnancy and afterwards to decrease the risk of having an infected child, including taking anti-viral drugs, having a Caesarian birth and refraining from breast feeding. "The risk is only about 7 per cent if she does everything right," said Lord Winston.

A number of newspapers last week were claiming that Lord Winston had overriden both the HFEA and his own ethics committee in treating the woman, but he said that was completely untrue. "The HFEA knew what we were doing and the chairman of the ethics committee did not think it was a matter which needed to be discussed by it," he said.

He did concede, however, that his decision to treat this case, when he was not willing to treat post-menopausal women, could appear to be inconsistent. After all, the life expectancy of a 56-year-old woman was likely to be much greater than that of a woman in her thirties with HIV.

"My decision not to treat older women has been based on two things. First, most of the older women - in their fifties - who have come to see me, have struck me as being utterly desperate women, who would be damaged by failure and miscarriage and whose expectations were unrealistically high. Second, donors have never expressed anything other than reluctance to have their eggs used by women over 50."

On the safety issue, he said that all units should be treating every case as if it is infected, "because when you are treating a large number of patients, some are bound to be HIV-positive, without you knowing it.

"I object strongly to the suggestion that I was 'playing God'. I was trying to do the reverse. If I had been 'playing God', I would have taken an arbitrary decision, based on my initial gut reaction which was not to provide treatment. But I had to stand back and take a more reflective view."

As it turned out, Lord Winston's infected patient did not manage to conceive at her first IVF attempt and has not tried since then. He is waiting to talk to the couple again.

He and other doctors in the field will undoubtedly face these ethical dilemmas for many years to come. In our present pluralist society, there are no moral absolutes and no correct answers to these questions. Moreover, there will never be uniformity because every patient and every doctor is different. But from the furore last week, it is clear that the public wants to have a greater say in the debate.

All we can hope is that doctors will share their decision-making more widely in the future - with colleagues, ethics committees and the public. With greater public debate, their decisions might appear less capricious.