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Whitaker case sparks calls for legal change

23 June 2003
By BioNews
Appeared in BioNews 213

James Whitaker's birth has provoked calls for fertility laws in the UK to be reformed. The Human Fertilisation and Embryology Act 1990 is now out of date due to advances in embryology and fertility treatments, say its critics, and it should be changed to allow the tissue typing procedure to be carried out in the UK for families in similar positions to the Whitakers. Evan Harris, Liberal Democrat health spokesman, said that Parliament should be allowed to 're-examine' the law which 'is 13 years old and is no longer up with clinical developments', adding that it prohibited new treatments, such as that used to create James, which the public would be likely to find acceptable. There has never been parliamentary or public debate on the ethics of the tissue typing procedure and the birth of so-called 'saviour siblings'.

The Whitakers first son, Charlie, suffers from Diamond-Blackfan anaemia, a rare blood disorder which means he needs blood transfusions every three weeks. His only chance of living beyond early adulthood is a bone marrow transplant from a compatible donor. After a request to use IVF technology with tissue typing was refused by the UK's Human Fertilisation and Embryology Authority (HFEA) last year, his parents travelled to the Reproductive Genetics Unit in Chicago for the treatment. The result was James, born on 16 June 2003 at a hospital in Sheffield, UK. Blood from his umbilical cord is being tested to see if the stem cells it contains can be used to treat Charlie. Previously, also following treatment at the Chicago centre, another British tissue matched child was born to provide suitable stem cells for a sibling with leukaemia.

The law says that the HFEA can allow treatments that are 'necessary or desirable for the purpose of assisting a woman to carry a child'. An HFEA spokesperson defended its original decision, saying 'HFEA policy states that women are allowed to have treatment only for the benefit of the embryo' - this is why the authority was able to allow the Hashmi family to use tissue typing, as it meant the new child would itself be free from disease. Suzi Leather, chair of the HFEA, commented 'we don't know what the social and emotional consequences will be. It seems to me that in this area of considerable uncertainty, where there is a possibility of theoretical risk, that we should adopt a precautionary approach'. But Ian Gibson MP, chair of the Commons Science and Technology Committee, said the law needs to be reviewed, adding 'you can't just handle these questions piecemeal in the way the HFEA has been doing'.

Others believe that no reform is necessary and the HFEA copes adequately with the requests it receives. Mark Henderson, writing in The Times, said that most people believe the HFEA was right to distinguish between the Hashmi and Whitaker cases: 'a dividing line must be drawn somewhere'. He added that 'the question of whether an embryo will benefit directly from a potentially risky procedure to which it cannot give consent seems to many observers to be the crucial one'. Professor Lord Robert Winston said that existing laws could cope with new challenges. 'I don't think there is any evidence that public opinion has been outstripped', he said.

As age of the saviour sibling dawns, pressure mounts inexorably to change embryo rules
The Guardian |  20 June 2003
Birth of 'saviour sibling' stirs call for debate on fertility law
The Times |  20 June 2003
Jamie's legacy: look again at law on designer babies
The Observer |  22 June 2003
There are plenty of reasons to have a baby, but how many of them are noble?
The Times |  21 June 2003
24 July 2009 - by Nisha Satkunarajah 
'My Sister's Keeper' is based on a book by the author Jodi Picoult. The youngest daughter of the Fitzgerald family, Anna (Abigail Breslin), decides to sue her parents for the ‘medical emancipation’ of her own body. Having been conceived through IVF and the resulting embryo tissue typed to ensure it was a match for her sick existing sibling, Anna was born for the primary reason of keeping her older sister, Kate (Sofia Vassilieva), a leukaemia patient, alive....
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...
13 April 2004 - by BioNews 
A UK fertility doctor says he is prepared to launch a legal challenge on behalf of a couple who want to conceive a 'saviour sibling' for their ill son. Two-year old Joshua Fletcher has Diamond Blackfan anaemia, a rare condition that could be cured with a blood stem cell transplant...
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...
1 September 2003 - by Juliet Tizzard 
A recent interview in the Times newspaper revealed that Suzi Leather, chair of the Human Fertilisation and Embryology Authority (HFEA), thinks that the time has come for a change to the UK's embryology laws. The interview with Ms Leather referred to a number of procedures which might need to come...
19 June 2003 - by BioNews 
A British couple have succeeded in their quest to have a tissue matched baby. Last summer, the Whitakers asked the UK's Human Fertilisation and Embryology Authority (HFEA) to allow them to use embryo screening (PGD) to provide a bone marrow donor for their sick son. After their request was refused...
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