Fletchers given 'saviour sibling' go-ahead

Dr. Kirsty Horsey

Progress Educational Trust

06 September 2004

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[BioNews, London] The licensing committee of the UK's Human Fertilisation and Embryology Authority (HFEA) met today to rule whether a couple can create a 'saviour sibling' to treat their seriously ill two-year-old son. It has decided that Joe and Julie Fletcher, from Northern Ireland, will be allowed to try to conceive an IVF baby who could help treat their son Joshua. Their doctor, 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. He later said that he would challenge the authority in court, should the application prove unsuccessful.

Joshua Fletcher has Diamond Blackfan anaemia (DBA), a rare blood condition that could be cured with a cell transplant from a tissue-matched donor. Having failed to find a matched living donor, his parents applied to use preimplantation genetic diagnosis (PGD) to conceive an IVF baby who would be able to provide Joshua with compatible umbilical cord blood cells. If transplanted to Joshua, these cells could stimulate his body to produce its own healthy red blood cells.

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 is now being used to help treat their son Charlie.

PGD involves carrying out a genetic test on IVF embryos, usually to select those unaffected by a particular disease, which are then returned to the woman's womb. The HFEA originally refused the Whitakers permission to have the treatment in Britain because the cause of Charlie's DBA was unknown. Some cases of DBA are caused by a mutation in a gene called RPS19, but for most, the trigger remains unknown. However, the authority has allowed families with children affected by beta thalassaemia to have similar treatment, since a genetic test for this blood disorder is available.

In July, the HFEA changed its policy on 'saviour siblings' - babies who are able to provide genetically matched cord blood for an existing sick child. The authority relaxed its rules so that families in the same situation as the Whitakers and Fletchers would be able to have the treatment, as well as those families where a genetic cause for the condition can be identified. The Fletcher decision is the first individual decision based on the changed policy. Future applications for the treatment, said the HFEA, will be looked at according to their 'individual merit'.

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