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Four couples affected by retinoblastoma, a rare childhood eye tumour, will start the screening procedure within weeks after a London clinic was granted a licence by the Government’s fertility watchdog.
The ruling breaks new ethical ground in the debate on “designer babies”, because retinoblastoma is rarely fatal, 95 per cent of cases are successfully treated, and only 90 per cent of those with the defective gene develop the disease.
Embryo screening has so far been permitted to prevent only conditions such as cystic fibrosis that are incurable or difficult to treat, and which always strike people with faulty genes.
The decision caused further controversy as it came days after the Human Fertilisation and Embryology Authority (HFEA) began a consultation about approving the technique for a wider range of disease genes. Embryo rights campaigners accused the watchdog of disdain for the public’s views, and called for a moratorium on new licences until the consultation is complete.
The retinoblastoma test, they said, would lead to the destruction of embryos that might be perfectly healthy, and others with a high chance of a normal life once their cancer has been treated. Doctors and patient groups, however, welcomed the decision, pointing out that women are already allowed to screen for retinoblastoma 11 weeks into pregnancy and abort affected foetuses.
The licence has been awarded to Paul Serhal, of University College Hospital, who last year became the first doctor in Britain permitted to screen embryos for any cancer. His application to test for the FAP gene, which causes bowel cancer, was revealed exclusively in The Times in November.
“This is a new era in the prevention of disease,” Mr Serhal said yesterday. “Patients are able not only to protect their children from harrowing conditions they know from experience, but can also get rid of it from the family line.
“It is not a question only of getting the right embryo, but of rooting out a gene that has blighted a family.”
Retinoblastoma, a cancer of the retina, affects up to one in 15,000 children and accounts for 11 per cent of all cancers that develop in the first year of life. In almost half of cases, it is caused by an inherited mutation in a gene called RB1. Parents with this defective gene have a 50 per cent chance of passing it on to any child, and it causes tumours in 90 per cent of those who inherit it.
The disease usually affects one eye, and about 95 per cent of cases detected early can be cured by radiotherapy or chemotherapy, often without permanent damage to eyesight.
The gene also raises the lifetime risk of suffering other cancers from a third to more than half.
The test relies on pre-implantation genetic diagnosis (PGD), in which embryos created by IVF are grown for three days to the eight-cell stage. One cell is then removed and checked for the defective RB1 gene, and only those without it are placed in the womb.
PGD was first used for retinoblastoma in 2003, by a team at Cornell University in New York. Josephine Quintavalle, of Comment on Reproductive Ethics, said: “The HFEA launched a consultation on this sort of cancer screening last week, and then they go ahead and approve it before the public has had a say. What’s the hurry?” John Gillott, of the Genetic Interest Group, which represents patients with inherited diseases, said: “Many of these people already opt for terminations . . . and there is a wide perception that screening embryos is preferable to abortion. It is certainly no worse.”
‘I underwent two abortions for their sake’
WHEN Angela Donovan was four months old she lost her right eye to retinoblastoma, a rare cancer that is often inherited.
When she became a mother 23 years later, she learnt that her son had the disorder. After a year of chemotherapy, he was cured without permanent damage to his eyesight.
But the couple did not want to repeat the experience. Mrs Donovan, of Edinburgh, twice became pregnant, but had abortions when tests revealed the gene. Last year, Lothian and Borders health authority said that it would fund embryo screening at University College Hospital in London.
“We have been waiting for years, and it’s fantastic that we can start,” said Mrs Donovan, now 28. “I understand people who think this is taking it too far, but if you have had to hold your baby down screaming while someone sticks a needle in him, you will understand.”
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