Boy denied designer baby cure

The parents of a desperately-ill boy said today they will seek specialist treatment in the US after being told they cannot create a "designer baby" in this country to help save his life.

Three-year-old Charlie Whitaker suffers from a rare blood disorder and requires a perfect tissue match, from a sister or brother, so that he can have potentially life-saving bone marrow treatment.

His parents Michele and Jayson Whitaker wanted to use genetic screening to ensure a new baby would be a perfect tissue match for a transplant of vital blood cells. But the Human Fertilisation and Embryology Authority (HFEA) vetoed the plan saying the procedure would be unlawful and unethical. The Whitakers, from Bicester, near Oxford, said they were devastated by the decision. Mr

Whitaker, 32, a contracts manager for a utilities firm, said: "I don't think they understand Charlie's disorder. We are just so disappointed and feel very let down by the decision.

"We are only trying to save our son's life. How anyone can say that is wrong I do not know."

The couple, who also have a baby daughter, say the decision by the HFEA has left them with no choice but to seek expensive treatment in the US. They fear time is running out for their son, who suffers from Diamond Blackfan anaemia.

The disorder means his body does not produce enough red blood cells and could cut short his life.

The best chance of saving him would be a transplant of umbilical blood cells from a brother or sister, and the closer the tissue match, the better the chance of it succeeding.

Using blood from the umbilical cord helps children suffering rare anaemias by kick-starting their body into producing healthy blood cells.

To get the best genetic match fertility experts use pioneering screening techniques to examine a single cell of an embryo created in a test tube.

Further specialist tissue-typing tests confirm whether the embryo is a close match, thus making it more likely for a transplant to succeed. Once a suitable embryo is chosen it can be transplanted into the mother's womb in the hope of achieving a pregnancy.

Immediately after the birth doctors collect the cord blood and harvest-its stem cells to help the sick sibling. But in Charlie's case the HFEA licence committee ruled that the "tissue-typing" procedure could not be carried out as it would break the law on human fertilisation and embryology.

A spokeswoman said: "Every member of the authority on the committee had enormous sympathy for

Charlie Whitaker and his parents, but they were unable to approve the licence." Earlier this year, the committee gave permission to Leeds couple Shahana and Raj Hashmi to create a "designer baby" to save their sick son Zain.

But the HFEA drew a crucial distinction between the two cases, saying the disorder threatening Zain's life had a genetic cause but the one affecting Charlie did not.

The HFEA has ruled that the screening of embryos can be carried out only if it is to prevent a genetic defect being passed on. In the Whitakers' case, they ruled the genetic screening would be used solely to ensure a tissue match with Charlie, rather than to detect a genetic cause.

Mrs Whitaker said: "We have always said we wanted four children. This way we would ensure a perfect match, to give Charlie the best chance, and also have another baby who will be loved and wanted. A few people have said we are playing God. My reply is that we are doing it because we want to save our son."