DESIGNER BABIES - PRIVATE CHOICE OR PUBLIC ISSUE?

REPORT OF THE ALDES FRINGE MEETING

SPRING CONFERENCE 1999 EDINBURGH

We were lucky to have 3 superb speakers at this fringe meeting: Prof Veronica van Heyningen, head of the MRCís cell genetics unit at Edinburgh, Dr Sarah Elliston of Glasgow Univ, and Dr Evan Harris MP. Veronica started by noting that societyís desire for babies with "desirable characteristics" goes back at least to the Spartans who left sickly infants on the hillside to perish. IVF technology (which allows fertilization of a human egg outside the womb and subsequent re-implantation) now makes it possible to assess a potential child at the 8 cell embryo stage. The DNA can be extracted from one cells and multiplied for analysis either by PCR - polymerase chain reaction, which uses an enzyme to double the quantity successively (230 gives a billion times) - or by inserting DNA into a bacterium which then multiplies.

Testing for gender is straightforward. One marking technique shows two red spots for the XX female chromosones and one red one blue for the XY male.

Children whose parents each carry the cystic fibrosis gene have a 1 in 4 chance of inheriting the disease. This can be detected, as can haemophilia (which can then be avoided in a male), sickle cell anaemia, Downs, and more.

In all these cases the "selection for desirable characteristics" is being done by exclusion. Parents are offered the opportunity not to proceed. The ethical issue is that posed by abortion. If "life" begins at the moment of conception, rejection of an 8 cell embryo is no different to the usual 12 week termination or the 24 weeks allowed in the Abortion Act. However genetics expands the issues. Should parents be allowed to reject an embryo merely on grounds of gender, or do they have a right to select gender, perhaps having had 3 children of one sex? Would this avoid substantial female infanticide in India and China? Do the ethics alter if the imbalance of sexes in one community becomes too great?

Then, what are the responsibilities of parents when a disability is detected? Does their desire to have a child, any child, over ride a responsibility to ensure it is not born to suffering or cost to the community? Does an unborn child have rights? Should the community say (as in theory it does now) that no child should be rejected for frivolous reasons? A consensus may exist to reject an embryo with hydrocephalus, but what of a Downs sufferer? Many live happy lives. Often the extent of disability is small.

Selection by detection is technically straightforward, but the use of gene therapy - substituting genes - is certainly not. This hazardous route delivered Dolly, but one can not cut the throat of baby as one might an abnormal sheep. Yet, some clinics are already trying gene therapy with both embryos and fetus.

At present sperm banks offer a safer route, but George Bernard Shawís response to actress Mrs Campbell who wanted to bear his child, is apposite. "What if our child has my beauty and your brains, not the other way round?"

Designer blond haired blue eyed babies remain distant. It is thought that neither hair nor eye colour derives from a single gene. The genetic inter-action which promotes IQ, seems even more complicated, whilst IQ may in any case be partly cultural. Even beauty lies in the eye of the beholder. Some characteristics may be inter related. It might be that red hair, for example, is linked to hot temper!

Sarah developed some of the ethical issues. European human rights legislation does not support an absolute right to parenthood. The test is welfare of the child. Some have suggested parents should actually be licenced and required to take a pre-conception course. This would be possible with the group relying on IVF treatment, though it is unenforceable with the majority.

But judging welfare is not straightforward. Should it include the need for a father or discriminate against post menopausal women (bearing in mind that men can father offspring into very old age), or lesbian couples?

Evan thought the House of Lords was frequently better informed and more sensible than the Commons in these matters. Most MPs had a poor understanding of science and could be blown about by press, constituents and pressure groups. Often the press acted as censors, prefering MPs who backed scare stories, forgetting that science moved forward by evolving consensus.

Genetic exploration will go on, said Evan, and though testing is expensive, those with money will find clinics in Harley St, the USA, or Middle East and implicitly challenge society to deny them the chance of a "perfect" baby. The public urgently needs much better scientific education (include the TV soaps, said a contributor) and MPs need courage to debate the issues and decide what the ground rules should be. An excellent meeting.