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Who should make decisions about embryo tests?

1 November 2004
By Dr Jess Buxton
genetics editor, BioNews
Appeared in BioNews 282
This week, BioNews reports on the Human Fertilisation and Embryology Authority (HFEA)'s decision to allow four couples to use embryo gene-testing to avoid passing on hereditary bowel cancer. The licence, granted to a team working at University College Hospital in London, is likely to set a precedent for other couples who want to avoid passing on mutated genes that confer a high risk of cancer. Is there any difference in using PGD (preimplantation genetic diagnosis) to avoid late-onset conditions, compared to those present from birth? Critics of the decision say that there is, and have accused the HFEA of 'moving the goalposts' in the regulation of PGD.

Cancer is a serious, life-threatening disease. Although it can be tackled using surgery, radiation and toxic chemicals, most people would prefer not to endure the illness or its treatment, if they had a choice. So why shouldn't people take steps to avoid cancer affecting their children, if they can? While most cases of cancer are not inherited, some people are born with a high risk of developing certain forms of the disease. People affected by familial adenomatous polyposis coli (FAP), which usually causes bowel cancer between the ages of 20-40, have a fifty per cent chance of passing it on to any child they have. The only treatment for those affected is to have large sections of the bowel removed - and even this drastic step can't guarantee that the cancer will not develop.

Allowing people to select embryos free from FAP-causing gene mutations, using PGD, is not a trivial use of the technology. But Josephine Quintavalle, of Comment on Reproductive Ethics (CORE), seems to think that FAP isn't as bad as it sounds. She told newspaper reporters that FAP is a disease that 'people can do something about', and that by the time these children are old enough to be affected 'there should be some advances in medical science'. CORE seems to be saying that rather than being allowed to use a proven technology to avoid passing on a serious genetic condition to their children, people affected by FAP should cross their fingers and hope for more effective cancer treatment in the future. Clearly, since PGD is an expensive, invasive procedure with a success rate lower than that of ordinary IVF, not everyone who carries an FAP gene mutation will want to use this technique. But surely the people affected by the disease are those best placed to make this decision?

When PGD was first developed fifteen years ago, there were concerns that it would lead to hoards of parents wanting to select babies on the basis of their eye colour, abilities and sexuality. This hasn't happened - most people just want a healthy baby, so even if it were technically possible to select embryos using a 'shopping list' of non-medical traits, there is no evidence that the demand for such babies would be high. Instead, fears over imaginary 'designer babies' mean that PGD for real people, with genuine medical problems, is tightly regulated. Like its use in selecting 'tissue-matched' babies to save a sick sibling, using PGD to avoid late-onset conditions shouldn't be a cause for concern. Instead, we should be happy that families with serious medical problems now have some control over the future health of their children. And the best people to make these choices are those who are directly affected, and the doctors who care for them.

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