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EDITIONS
Thursday, 1 August, 2002, 17:35 GMT 18:35 UK
Couple closer to creating 'designer baby'
Charlie needs a transplant within 18 months
A couple are to get help from the United States so they can create a 'designer baby' to save the life of their seriously-ill son.

Jayson and Michelle Whitaker from Chester-le-Street in County Durham had asked regulators to allow doctors to use IVF techniques to select a baby who would provide a perfect tissue match for three-year-old Charlie.

He has a rare blood disorder and requires a perfect match so he can undergo a bone marrow transplant and live a normal life.

On Thursday the Human Fertilisation and Embryology Authority (HFEA) ruled the procedure could not be carried out by doctors in the UK.

Michelle and Jayson Whitaker
The parents say they are devastated by the decision

The couple, who now live in Oxfordshire, and their doctor criticised the decision and will now go to Chicago, where the treatment is allowed.

Scientist in Chicago will carry out the genetic tests needed to create a second child for the Whitakers.

Charlie Whitaker suffers from Diamond Blackfan Anaemia (DBA) which means his body doesn't produce enough red blood cells.

He takes drugs every day and requires a blood transfusion every three weeks to keep his organs in working order.

His only chance of living a normal life is if bone marrow can be donated by a sibling who is a perfect match.

Another child

However, at present no such sibling exists. A daughter born last year only has a 50% tissue match.

If a transplant is to be an option, the Whitakers need to have another child.

Doctors need to take stem cells from the baby's umbilical cord and transplant them into Charlie's bone marrow.

But a transplant must be carried out within 18 months if it is to have a good chance of being successful.

Mr and Mrs Whittaker only have a one in four chance of naturally having another child who is a perfect tissue match.

Genetic disease

The HFEA turned down the application for a licence to carry out the procedure on technical grounds.

Under its rules, embryos can only be screened if there is a risk they will carry a serious genetic disease.

However, officials ruled that in this case the chances of an embryo having DBA are relatively low - just one in 50. In any case, there is currently no way of testing for the disease in unborn children.

Dr Maureen Dalziel, HFEA chief executive, said: "We have turned down this application...because it does not meet the carefully considered criteria laid down to ensure that the procedure is lawful and ethical."

Regulators wrong

However, the Whitakers said they were "absolutely devastated" by the decision.

Mr Whitaker said: "I don't think they understand Charlie's disorder. I don't think anyone knows what he goes through until they see him."

Their doctor, fertility expert Dr Mohammed Taranissi said regulators were wrong to block the procedure.

"It is ridiculous," he said. "I don't understand why we should struggle like this."

The HFEA was criticised by MP's in July for granting a licence to create a so called 'designer baby' to another couple in similar circumstances

 WATCH/LISTEN
 ON THIS STORY
The BBC's Samantha Simmonds
"The Whitakers can now appeal or go to America for treatment"
Jayson Whitaker, father of Charlie
"We don't really understand why they said no"
Fertility expert Dr Yury Verlinsky
"I don't understand how the HFEA can allow other couples to do it, but not this one"

Click here to go to Oxford
See also:

18 Jul 02 | Health
12 Dec 01 | Health
02 Aug 02 | Health
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