HFEA to change its mind on 'saviour siblings'?

Dr. Kirsty Horsey

Progress Educational Trust

19 July 2004

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[BioNews, London] The UK's Human Fertilisation and Embryology Authority (HFEA) is reported to be considering changing its policy on 'saviour siblings' - babies who are able to provide genetically matched cord blood for an existing sick child. The news follows a recent request from the Fletcher family, who are seeking permission to conceive a baby who could help treat their son Joshua. Mohammed Taranissi, of the Assisted Reproduction and Gynaecology Centre in London, was invited by the HFEA to submit a test case licence application for the family. Earlier this year, he said that he would challenge the authority in court, should the application prove unsuccessful. However, the HFEA is expected to approve the family's treatment following its meeting this Wednesday, Taranissi has revealed.

Two-year old Joshua Fletcher has Diamond Blackfan anaemia (DBA), a rare condition that could be cured with a blood stem cell transplant from a tissue-matched donor. His parents, Joe and Julie Fletcher, want to use preimplantation genetic diagnosis (PGD) to conceive an IVF baby who would be able to provide Joshua with compatible umbilical cord blood. Some cases of DBA are caused by a mutation in a gene called RPS19, but for most, the trigger remains unknown. In 2002, the HFEA turned down a request from the Whitaker family, who were also seeking to use PGD to conceive a tissue-matched baby to help a sibling with DBA. Michelle and Jayson Whitaker later travelled to Chicago to conceive their son James, born in June 2003, whose umbilical cord blood will be used to help treat their affected son Charlie.

PGD involves carrying out a genetic test on embryos created in IVF, usually to select those unaffected by a particular disease, which are then returned to the woman's womb. The HFEA refused the Whitakers permission to have the treatment in Britain because the cause of five-year-old Charlie's illness is unknown. This means the Whitakers, like the Fletchers, could only use PGD to establish tissue type, and not to find out whether an embryo was disease-free. The authority has, however, allowed families with children affected by beta thalassaemia to have similar treatment, since a genetic test for this blood disorder is available. The first of these couples, Raj and Shahana Hashmi, recently stopped IVF treatment after six unsuccessful attempts at conceiving a baby to save the life of their son Zain.

The HFEA is now expected to relax its rules over saviour siblings, to allow families in the same situation as the Whitakers and Fletchers to have the treatment. 'The HFEA operates in a fast moving area of science so it is important that it continues to keep all its policies under constant review', Suzi Leather, chair of the HFEA, told BBC News Online. But Josephine Quintavelle of the pressure group CORE, which mounted an unsuccessful legal challenge to the HFEA's decision on the Hashmis, described the treatment as 'unethical and unnecessary'. She told the BBC that 'the HFEA should not be making these decisions. They should be made by the public and parliament'.

IVF expert Simon Fishel told the Observer newspaper that the rule changes could benefit hundreds of couples and save the health service hundreds of millions of pounds a year. He said that as well as helping couples to save the lives of children with rare blood diseases like DBA, saviour siblings could also be conceived to help children with leukaemia. 'The public think this is about designer babies; in fact, the technique offers enormous potential', he added.

Reproduced with permission from BioNews, an email and online sources of news, information and comment on assisted reproduction and genetics.