17 December 2001

DESIGNER BABY OPENS DOOR TO A SCIENTIFIC NIGHTMARE

Interesting to see this expression of concern from a scientist who has seemed at times to complacently push the inevitability of genetically engineered humans.

Item via Human Genetics Alert (www.hgalert.org)  <Info@hgalert.org>

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With this designer baby we open the door to a scientific nightmare

SATURDAY DECEMBER 15 2001

ROBERT WINSTON

I am truly concerned by the ruling of the Human Fertilisation and Embryology Authority (HFEA) this week in the case of Zain Hashmi, a two-year-old boy with a blood disorder causing severe anaemia. Children such as this usually require repeated blood transfusions to keep them alive, and their only help of a permanent cure is to find a compatible bone-marrow donor who can donate stem cells to them. No such match has been found and Zain’s family have requested IVF with genetic screening so that their next baby will not suffer from the same disease. Few people would quarrel with this.

What makes the family’s request unusual is that they ask that Mrs Hashmi’s embryos are also screened for their tissue type. Research into the human DNA - sequencing the human genome - makes this a possibility. A baby whose tissues are compatible with those of Zain could be a potential donor of life-giving stem cells from its umbilical cord soon after birth. The HFEA has yielded to this request - motivated, I am sure, by genuine compassion. But in doing so it has, in effect, given permission for the first British designer baby.

Clearly, there is nothing wrong or damaging in a newborn baby giving cells from the umbilical at birth. But if this treatment fails, the child may later be expected to give bone marrow or other tissues, or even possible organs.

It will never be in a position to give free consent because it will owe its life to its parents‚ love for the older sibling. And it may, in time, feel extremely guilty if the treatment fails, or if it does not want to undergo the surgery required for a transplant of stem cells. The chairman of the HFEA says that the courts can protect it but no jurisdiction can prevent the feelings of guilt, distress, obligation that it may experience.

As it happens, this treatment is likely to fail in any case. Such genetic diagnosis with tissue typing is excessively difficult and currently carries no more than a 2 to 3 per cent chance of success. A mistake may also be likely, so it is possible that the new baby may not have the desired characteristics.

The recent publication of the human genome has led many people to believe that treatments such as this will become commonplace. This overconfidence is worrying and these issues raised by the whole genome project will be examined in a BBC television programme, The Threads of Life, tomorrow.

The real concern is that we might in time debase our own humanity. In itself, it is difficult to argue that there is anything wrong with producing a human clone. There are, after all, some 25,000 human clones in the UK living perfectly normal lives - they are identical twins. The
main objection to manufacturing a clone of another human being is essentially that the new person would be at risk being a commodity ­ a human born not for its own sake but because other people have some purpose for it.

Few scientists believe that the doctors who have been boasting that they will produce human clones are really capable of doing so safely. Dr Severino Antinori - the Roman infertility doctor who has gained notoriety by saying he will attempt it - has less relevant scientific publications than most of the junior hospital doctors who work with me at Imperial College. But his overconfident statements have done huge harm because they bring valuable DNA science into public disrepute.

Knowledge of our DNA has the most profound implications. There is no doubt that untold good could spring from this technology. With better understanding of how our environment interacts with our genes, there is huge scope for effective preventive medicine. Better drugs with fewer side-effects will be made available for cancer treatments - indeed, the chance of real cures for the many forms of cancer now becomes a distinct reality as is demonstrated by the Nobel prize given to Paul Nurse and Tim Hunt.

And, of course, there is the real possibility of producing transplantable stem cells that will help thousands of babies such as Zain Hashmi. With better regulations and controls, there must be every hope that these advantages could be for the whole of humanity, not just those in the rich West.

Perhaps this is what is worrying about the decision of the HFEA. There will be concern that its decision over the Hashmi family, though taken for the most compassionate reasons, is not wise. The technology is too fragile to be conducted safely here, and the risks to our notion of humanity are very real.

So the news that a previously well-respected regulatory body is prepared to bend the rules - for whatever good reason - produces an uncomfortable frisson that we are on the edge of a very dark journey.

The author is Professor of Fertility Studies at Imperial College, London.