Doctors are given go-ahead to screen embryos for eye cancer

Four couples at risk of having children with retinoblastoma, a rare childhood eye tumour, will undergo the treatment after a London clinic was granted a licence by the government's fertility watchdog.

The decision breaks new ethical ground in the debate on "designer babies", because retinoblastoma is rarely fatal. Treatment is successful in 95 per cent of cases and not all of those with the defective gene develop the disease.

Pre-implantation genetic diagnosis (PGD) allows a women to have embryos produced through in vitro fertilisation (IVF) screened for a faulty gene. A healthy embryo is then chosen to be implanted and the others destroyed before they are more than 14 days old.

The Human Fertilisation and Embryology Authority (HFEA) has granted licences for PGD in the past for conditions such as cystic fibrosis that are incurable or difficult to treat. But retinoblastoma does not fall into either category.

The procedure also means a number of embryos will be destroyed, causing outcry from pro-life groups.

The government is currently consulting on whether doctors should be allowed to screen for late onset inherited cancers like breast and ovarian cancer.

Dr Paul Serhal, of the assisted conception unit at UCH, said there were a number of reasons to cut off retinoblastoma before it develops. He pointed out that people with retinoblastoma have a 50 per cent chance of developing another cancer at a later point in life. He also said that screening would rid families of the faulty gene for good.

"This gene goes from generation to generation and this is the first time we can say we have cut it off," he said.

And he pointed out that women already are allowed to screen for retinoblastoma 11 weeks into pregnancy and abort affected foetuses.

"Rather than having a termination we give them the option of choosing a normal embryo. Is there anything better than that?" he asked.

For the women who carry the retinoblastoma gene, the licence is an opportunity to end the heartache.

Angela Donovan already has a son, Kieran, who suffered the cancer in early life. Now she wants another child without the risk of more agony.

She said: "Kieran was lucky. I was lucky. The cancer can develop so much in the womb the baby can be born with it spread to its spine and brain. That is rare but who wants to play Russian Roulette with their children?"

However, Dr Calum McKellar, research director of the Scottish Council on Human Bioethics, called for a moratorium on all new licences until the HFEA has specifically finished the public discussion on the use of PGD.

He said: "Since this procedure is being undertaken on the NHS and not just privately, the wider public is entitled to discuss the procedure before such an important step is taken."

"The Scottish Council on Human Bioethics has a lot of sympathy for the Donovan family. However, such important decisions should be taken by parliament and not a quango such as the HFEA."

"If this does not happen the floodgates for using PGD for all sorts of disorders or limitations may be open, even selecting out embryos who do not have the musical genes. Where do we stop?", he added.

'I could not have coped with another child suffering'

ANGELA Donovan could not cope with not having children, but neither could she cope with having another child with cancer.

That left her with a stark choice: to try and have a baby in the hope it would be healthy, while being aware it was just as likely to have the genetic cancer that she and her younger son Kieran suffered from.

Angela lost her right eye to retinoblastoma when she was four months old. Her son Kieran, now five, survived with his eyesight intact but only after "terribly traumatic" chemotherapy in the first 18 months of his life.

Angela does not want to take any of these risks with her second child, so three years ago she decided to pursue the option of pre-implantation diagnosis.

At first Angela's request for funding from NHS Lothian was turned down. In the intervening years she had two terminations after both embryos were found to have the gene in prenatal tests.

Finally, this week, the Human Fertilisation and Embryology Authority granted a licence for the procedure to go ahead at the University College Hospital in London.