Dr. Kirsty Horsey, Progress Educational Trust
22 October 2004
[BioNews, London]
Charlie Whitaker, the boy at the centre of a fierce debate over so-called 'saviour siblings', is 'effectively cured' of his rare blood condition. Six-year-old Charlie, who has Diamond Blackfan anaemia (DBA), received a transplant of cells taken from the umbilical cord of his brother James earlier this year. Three months later, tests show that Charlie's bone marrow now looks 'entirely normal', according to Ajay Vora, consultant haematologist at Sheffield Children's Hospital.Vora stressed that Charlie would need to be followed up to be '100 per cent certain' of the success, but said that so far 'what we have seen looks to be very, very positive', and that Charlie could now look forward to a normal quality of life. Before the transplant, Charlie required blood transfusions every three weeks, and drug infusions nearly every night. His mother Michelle told BBC News Online: 'Charlie's energy level has changed dramatically. He is on the go constantly - he is just like a different person'.
The Whitaker family used preimplantation genetic diagnosis (PGD) to conceive a child that would be an exact tissue match for Charlie, since no-one else in the family was a suitable bone marrow donor, and no other suitable donor could be found. Like bone marrow, the umbilical cord contains blood stem cells, which can be used in transplant operations to treat conditions that affect the white or red blood cells. But the Human Fertilisation and Embryology Authority (HFEA) refused the Whitakers permission to undergo the procedure in the UK, so the family travelled to the US for treatment. At the time, the HFEA said that PGD could only be authorised to avoid passing on a serious inherited illness to the child. Although some cases of DBA are caused by mutations in a known gene, the cause of Charlie's condition was unknown, so the Whitaker's wanted to use PGD solely to determine tissue type.
The HFEA has recently changed its policy on the use of PGD for tissue-typing only, saying that it can now be authorised in certain cases. The first family to benefit from this announcement were the Fletchers, whose son Joshua also has DBA. Two other couples are now reported to be going through the same treatment in Britain, and doctors estimate that up to 100 people each year could be treated by genetically selected donor babies. Ethicist John Harris of the University of Manchester said the HFEA was to be congratulated on changing its mind. But he also added that 'one must remember their original decision', which if it had stood, it would have resulted in one very sick, possibly dead child, instead of two happy, healthy children.
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