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1 August 2007

The dangers of 'spare part' babies

Abortion for all. IVF at 60. Now 'spare part' babies. What a dangerous path we are treading...

Another day, another terrible ethical dilemma. In response to the draft Human Tissue and Embryo Bill published in May, a committee of MPs and peers want us to give the nod to a vast increase in what are known as "saviour siblings" - more - shockingly termed "spare-part babies" - born to meet the specific needs of elder, ill siblings by providing a tissue match that could cure them.

They also want us to accept the creation of hybrid embryos, created by fertilising an animal egg with human sperm, a concept that makes me feel deeply uneasy.

Those of us who see the ethical slopes of reproductive medicine becoming ever more dangerously slippery can expect to be accused of heartlessness. Are these developments not designed to cure diseases suffered by young children?

The answer is, of course, yes . . . for now. But in the future there will, inevitably, be pressure to relax the rules still further. At what point do we call a halt? Why not create "spare-part babies" to help cure adults who suffer from diseases?

My concern is that this is the thin end of the wedge.

To help explain why, we should examine the timeframe in which these momentous medical developments have been taking place. Little more than two years after the House of Lords ruled it lawful to use fertility treatment to create and select an embryo that could help save a sibling's life, we are already demanding the rules be relaxed further.

The original case revolved around Zain Hashmi, then six, a beautiful little boy with Betathalassaemia Major, a potentially fatal genetic blood disorder.
Like any loving parents, Raj and Shahana Hashmi were prepared to move heaven and earth to save Zain's life: his best hope lay in a bone marrow transplant from a sibling with a compatible blood-type.

"Zain has a right to life, and we want to ensure he gets that right," said his mother. Understandably, she wanted to save her child - any worry about ethical implications was the furthest thing from her thoughts.

Raj and Shahana had already tried naturally to find a compatible sibling: another baby conceived by Shahana was found to have the same disease and was aborted; when the next was born, the child turned out to have incompatible tissue.

So the couple were overjoyed to be given permission by the Human Fertilisation and Embryology Authority (HFEA) to maximise Zain's chances through the use of selective in-vitro fertilisation (IVF) treatment.

This necessitated a batch of Shahana's eggs being fertilised in a test tube, with a cell being taken from each embryo and tested for genetic disorders, until one was found that was compatible with Zain; the embryo would then be brought to term by his mother.

A campaign group called Comment on Reproductive Ethics (CORE) - which believes in absolute respect for the integrity of the human embryo - challenged the decision, claiming the logical next step would be to permit the testing of an embryo to see if it had the colouring or intelligence its mother wanted.

When the case reached the House of Lords, one Law Lord, Lord Brown, was also troubled by the notion that this was "straying into the field of designer babies". But he consoled himself that Parliament would never license genetic selection for purely social reasons.

Lord Hoffman, the controversial high-profile lead judge, seemed not at all worried about such a development and ruled that the ethical issues were a matter for the HFEA.

The director of CORE, Josephine Quintavalle, was devastated when the judgment went against her, but, like Lord Brown, she was sure that when Parliament looked at the issue, it would not relax the laws on genetic selection.

Unfortunately, as today's report demonstrates, history suggests that such laws are usually loosened, not tightened.

I'm old enough to remember the heated debate in 1967 when the then Liberal MP David Steel brought in a Private Member's Bill legalising abortion.

There was widespread public sympathy for the women injured and criminalised by back-street abortions, but still, many people feared that legalisation would open the floodgates and abortion would become just another kind of contraception.

"Nonsense," we were told, "abortion will be the last resort." And down the slippery slope went public ethics.

The Abortion Act came into law in April 1968: that year there were 23,641 abortions, a figure that more than doubled the following year and continued to rise inexorably. Last year there were 200,000.

To put it another way, in 1969,5.9 per cent of pregnancies ended in abortion; 30 years later the figure was up to 21.8 per cent. The stigma has gone: foetuses are disposable. There was just one pause in the headlong rush towards unfettered abortion. In 1990, faced with the undeniable truth that to abort a 28-week-old foetus was to kill a viable baby, the limit was reduced to 24 weeks.
Now we are so coarsened that even Tony Blair, whom we are assured is a Roman Catholic in all but name and should be opposed to all abortion, showed no interest in responding to pleas to reduce the limit further, as medical advances have now made it possible for babies to survive at 20 weeks.

As with abortion, so with IVF. Originally, it was to be made available to congenitally infertile women, but the slide began when having a child became perceived as a right: these days, we are heartless puritans if we think it wrong for women in their 60s to give birth. The issue of spare-part babies is even more disturbing.

Those of us who believe that difficult cases make bad law were wary of letting our hearts rule our heads over the test case of Zain Hashmi: like the CORE and Lord Brown, we saw where this could lead.
I'm sorry to say we've been proved right.

In Zain's case, the Lords approved the selection of an embryo that could keep him alive. Now a committee of MPs and peers demands that embryos be used to help cure children of non-fatal conditions such as sickle-cell anaemia.

And parents being parents, many will plunge ahead and opt for embryo screening in the interests of their sick babies.

Now that the embryo of a potential sibling can be sacrificed or saved in the interests of the living child, eggs are commodities.

Younger children who discover that they came into the world purely because they were useful to their elder sibling might be happy about that, but I think we should, at least, contemplate the possibility that they could be psychologically badly damaged.

Many leading members of the medical profession are already hell-bent on ensuring that only the perfectly healthy are born. It must be very distressing for people born with genetic ailments to know that in another generation people like them will be aborted if they fail a laboratory test.

How long before designer babies become the norm?
Not long, is my guess. Just as middle-class Indians have female foetuses aborted for social reasons - hus causing a demographic catastrophe - so the selfish in our society will want nothing but the best from their offspring: perfect health, beauty and brains.

The notion that you love and cherish whatever baby you produce will become a concept of the past, as parents draw up lists of the key features they want the labs to help provide.

Science and technology are developing at such a frightening pace that society has no time to make sober decisions about where limits should be imposed.
Those MPs and peers seem unworried about the medical establishment and scientists playing God.

Is it too much to hope that before the Government and Parliament agree to remove the few remaining constraints from the operation of reproductive medicine, our rulers might take some time out to think hard about the law of unintended consequences?

Ruth Dudley Edwards


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