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Couple refused PGD for tissue typing

5 August 2002
By BioNews
Appeared in BioNews 169

A couple seeking embryo screening to provide a bone marrow donor for their sick son have been refused access to treatment by the Human Fertilisation and Embryology Authority (HFEA). Michelle and Jayson Whitaker want to use PGD (preimplantation genetic diagnosis) to have a baby who will be able to donate tissue to their three year-old son, Charlie. However, the HFEA refused their application, saying that the law does not allow such a use of the technique.

Charlie Whitaker suffers from Diamond-Blackfan anaemia, a rare disorder of the blood which means he has to undergo a blood transfusion every three weeks. His only chance of living beyond about 30 years is a bone marrow transplant from a compatible donor. The Whitakers have had a daughter since Charlie, but she is unfortunately not a tissue match. Rather than leaving it to chance again, the Whitakers sought PGD to ensure that their next child will be able to help Charlie. But the HFEA says that it cannot authorise treatment because the Whitakers are not at risk of having another child with the same condition and seek PGD for tissue typing alone.

Besides causing Mr and Mrs Whitaker dismay, the HFEA decision has left others bemused, particularly since it authorised a similar request for treatment only a few months ago. Shahana and Raj Hashmi were given access to PGD because they are at risk of having a child with the same condition from which their son suffers. Dr Evan Harris, Liberal Democrat health spokesman, said: 'From the patient's point of view, it is difficult to justify a distinction between the use of embryo screening to save the life of a child with an inherited disease..., but not to save the life of an equally sick child like Charlie Whitaker simply because the condition is not hereditary.'

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The painful dilemma over babies by design
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The sick little boy science won't save
The Daily Mail |  2 August 2002
28 July 2004 - by BioNews 
Charlie Whitaker, the boy at the centre of one of the fiercest debates over so-called 'saviour siblings' has had a stem cell transplant and is 'on the road to recovery', say his parents. Jayson and Michelle Whitaker made the decision last December to go ahead with the treatment, made possible...
8 December 2003 - by BioNews 
According to a report in the Daily Mail this weekend, Michelle and Jayson Whitaker have now made up their mind to go ahead with the stem cell transplant that may save their son, Charlie. In June, the British couple, who were refused permission by the UK's Human Fertilisation and Embryology...
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