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Two recent contrasting events have focused our minds on the genetic selection of embryos. One was the birth of a baby boy in the USA, selected to be able to provide bone marrow for his elder sister who is dying of a rare genetic disease. Meanwhile an Angus couple with four sons are going to the European Court for the right to use embryo selection to have a girl, after the tragic loss of their only daughter in a bonfire accident.
Unlike cloning which burst on us unawares, or GM food where policy makers simply ignored emerging public concerns, the ethical issues of genetic selection have been debated for over a decade. "What if ..?" scenarios like these two cases have been examined at length by ethicists, doctors and lawyers in countries all over the world. In April 1997, the Parliamentary Assembly of the Council of Europe, comprising MP's from 41 countries, passed the European Convention on Human Rights and Biomedicine. It lays down that genetic testing can only be done for health purposes, and sex selection must be not be permitted except to avoid a serious hereditary sex-related disease. The UK Human Fertilisation and Embryology Act already came to similar conclusions.
These draw a clear line between a serious medical condition and consumer preference. And that is the right place to make it. To allow sex selection, even in the tragic circumstances of the Scots couple, is to cross that ethical line. Once crossed there would be no logical reason not to allow any form of consumer preference in babies - blue eyes, intelligence, musical ability, or whatever. Fortunately, most of these are multiple genetic effects which are highly unlikely to be selectable, but we have to put down a clear marker, nonetheless.
What's so wrong with selecting for genetic enhancement? Several things. First, it assumes the right to create and destroy embryos you don't want, not because they suffered some dreadful genetic disease, but just because they happened to be male, and you prefer female (or the other way round), or some other preference. The status of the embryo is hugely controversial. For some even the American case would be wrong, because human embryos were destroyed to select out the faulty gene. The present UK Act attempts a compromise, decreeing that human embryos command a special respect, and should not be used except under exceptional circumstances. Selection for gender or enhanced intelligence is a trivial reason to throw away a potential human being.
Secondly there is a justice issue. To try to reproduce may be a basic human right, but as soon as you start specifying what sort of child you demand to have, you move out of human rights into personal preferences. These preferences have serious social implications. A technology originally developed for limited medical purposes easily becomes abused to advantage the powerful. What right has any human being to programme in a genetic advantage for their children, just because they happen to be rich enough to afford it? Perhaps most worrying of all is the assumption that here the individual is king, that consumer choice is a new moral absolute. "No man is an island," said John Donne. Society has a right to say what a technology it has funded and developed will, or will not, be used for.
Lastly, it shows a lack of understanding of what it is to be a human being. I have referred to rights several times, but Christian ethics stresses that a child is not a right but a gift. We are losing that givenness about a human life, that it is not ours to demand or to manipulate. We understand coping with bereavement. In our case, we have not been able to have children at all. We tried IVF and it failed twice. We realised there are limits on pushing to get what we want. A good life can still be possible even if we don't get it. Those who have children want the very best for them, but not at the cost of "designing" them. The costs were well illustrated in the play "The Gift", put on by Y-Touring Theatre Company for the medical charity the Wellcome Trust at the Edinburgh Festival. Parents choose an embryo both to avoid a deadly genetic disease and to select, hypothetically, for athletic ability. Twenty years on, the resulting boy is in now the national basketball squad. Accidentally he discovers how he had been conceived, and he is furious with his dad. "It's not my ability," he rails, "Its just what you programmed me to have!"
Later this year MP's will vote on whether we should use embryos as a source of replacement cells, following the recent Donaldson report. This marks another watershed I think, on balance, we should not cross. We live at a time when biotechnology is pushing hard at the bounds of ethical norms. Sometimes we have to say "no" because more important issues are at stake. Embryo selection is a case where the current law is also right. Cross this line, and designer babies will follow.
For other issues in human genetics see our SRT Human Genetics Pages.
