Another legal fight over UK saviour sibling?

Dr. Kirsty Horsey

Progress Educational Trust

13 April 2004

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[BioNews, London] 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 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. Mohammed Taranissi says he has applied to the Human Fertilisation and Embryology Authority (HFEA) for permission to carry out the treatment in Britain, and will challenge the authority in court if the application is unsuccessful.

Diamond Blackfan anaemia (DBA) is a rare, incurable blood disorder, caused by a failure of the bone marrow to make red blood cells. It affects an average of seven babies born every year in the UK. Some cases of Diamond Blackfan anaemia 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 another family 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, whose umbilical cord blood will be used to help treat their affected son Charlie.

PGD involves carrying out a genetic test on embryos created using IVF techniques, 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 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 Hashmi family are continuing with their attempts to conceive a baby which will be both free from beta thalassaemia, and which will be a tissue-match for their son Zain. However, they currently face a legal challenge to the HFEA's decision, by the pro-life group Comment on Reproductive Ethics (CORE).

Joe Fletcher says that the HFEA's policy on so-called 'saviour siblings' is 'out of step', adding that 'they have the right to choose life or death for our son, simply by giving us the thumbs up or thumbs down'. Taranissi, of the Assisted Reproduction and Gynaecology Centre in London, says that if his clinic's application to treat the Fletchers in the UK is unsuccessful, then he is 'fully prepared' to go through the courts to fight for permission. 'I think the time has come to challenge the HFEA and its thinking on this one', he told the Daily Mail. The Fletchers have apparently remortgaged their house, in case they need to raise the ?30,000 necessary to travel to Chicago for treatment. A spokesperson for the HFEA said that could not comment on whether the Fletcher's application would be approved.

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