Yvonne Roberts: Mrs Hashmi wants more than a baby, she wants a miracle

Sunday 13 April 2003 00:00 BST
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The issue of cloning and the creation of genetically screened designer babies with the potential to "cure'' terminally ill siblings took one step forward and two steps back last week. What happened perfectly illustrated the chasm – at least according to the media – between those who view this as the exploration of compassionate new frontiers in medical research, and those who see it as an unnecessary incursion into dark, dangerous and possibly ungodly terrain.

The truth, of course, is that as a society we are somewhere in the middle, muddled and confused by romanticised ideas about parenting and motherhood; foxed by scientists' exaggerated claims of medical breakthroughs; and fazed by those who argue that this is eugenics-to-go: the beginning of a Frankenstein market in ordering up babies with the "right'' skin colour, nose and disposition, fit to last a lifetime.

On Thursday MEPs voted to halt the creation and use of human embryos for stem cell research in all circumstances. The European Parliament ignored pleas from scientists that to ban the technology that centres on the study of genetic diseases would mean losing the opportunity to find cures for medical conditions such as Parkinson's and diabetes.

EU governments have to give their approval, and they will now be lobbied assiduously by the anti-abortion groups who have learnt valuable campaigning lessons from the religious right in the US. They argue that such research involves the creation and destruction of life.

A few days earlier, in the UK, the Court of Appeal supported the original decision of the licensing body, the Human Fertilisation and Embryology Authority (HFEA), which will allow, in effect, the attempted conception of the first designer baby, ending an 18-month court battle for Raj and Shahana Hashmi.

Their four-year-old son, Zain, has a rare blood disorder that could kill him at any time. Now, for the first time, not only will embryos produced by the Hashmis be screened for the defective gene, but they will also be selected if they match Zain's tissue type. Life-giving stem cells will then be taken from the new baby's umbilical cord, which is normally thrown away.

"We are not designing, we are not cloning, we are making use of waste,'' Mrs Hashmi insists. "We will love this baby just as much. All we want to do is save our son from this horrible fate.''

If this fails, the new child wi11 eventually become a bone-marrow donor for his brother. Several other parents plan to follow the Hashmis' lead. "While we have great sympathy for the family,'' counters Paul Tully from the Society for the Protection of Unborn Children, "just because a child's life is at stake does not mean you discard all ethics.''

Robert Winston, Professor of Fertility Studies at Imperial College, London, has written of the dangers of turning another human being into "a commodity, a human born not for its own sake but because other people have a purpose for it.'' However, many – if not most – babies are born because other people have a purpose for them. For instance, to patch up a failing marriage; to fill an emotional void; to act as a diversion for a flagging career – even, if they're lucky, to act as a recipient of unconditional love.

The rights of the child are obviously vital – and too often, they are marginalised. But whose rights should take precedent? Zain's to a life? Or his sibling to a more orthodox reason for conception? What if Zain dies, and the sibling is left with the burden of guilt? What if he or she grows up resentful of the role of saviour in the family? One suspects that the answers depend upon the child, the parents, and the degree of emotional honesty employed by all. He or she might even relish being the unique branch of the family tree.

An even greater concern is the lack of acknowledgement that the Hashmis' efforts have next to no chance of success. Zain's story isn't a medical breakthrough, as is so often portrayed. It's a pioneering piece of research in which human beings are acting as the guinea pigs. And that raises its own ethical dilemmas.

Mrs Hashmi has already undergone one termination at 15 weeks, when the same defective gene that resulted in Zain's ill- ness was detected. Two attempts in the US to produce a child with the same tissue type have also failed. Now she will undergo IVF treatment. It is invasive, unpleasant and the potential side effects are only just emerging, one of which is a possible connection with cancer. IVF also has a scandalous failure rate as high as 70 per cent. In any other field of endeavour, after 25 years of experience, that would suggest the need for serious reappraisal.

Even if Mrs Hashmi does become pregnant, genetic diagnosis with tissue typing is an excessively difficult procedure and currently carries no more than a 2 to 3 per cent chance of success, according to Professor Winston. In short, what the Hashmis are looking for is a miracle.

No one can blame them for trying, and their sense of impotence if they do nothing might be greater than they could bear. But is the medical establishment really acting responsibly when it allows them access to techniques that are at such an early stage of development? Ultimately, is this attempt to help them lessening or increasing the burden of their pain? In the future will mothers and fathers in similar circumstances experience increasing pressure to try each fledgling medical development as proof of "good'' parenting?

Perhaps one fatal flaw lies at the heart of all these ethical dilemmas. The moral debate is being conducted among too few people: doctors, lawyers, scientists, MPs and the so-called great and the good appointed to quangos such as the HFEA. The issue desperately needs to be widened out. At present, too, we have hypocrisy, hype and propaganda when what we need are facts, maturity and clarity of thought.

Zain's parents are handsome and eloquent. One wonders, for example, if they had been tattooed and inarticulate whether the media would have backed them so whole-heartedly. A plausible image is a poor foundation for a fresh moral consensus. Stem cell research and cloning will, eventually, become established. But the terms on which that takes place is an urgent matter for us all.

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