NHS to fund 'saviour sibling' treatment

A second UK couple are hoping to use PGD (preimplantation genetic diagnosis) to conceive an IVF baby free from beta thalassaemia, who will also be able to provide cord blood to treat a sibling with the incurable blood disorder. The IVF treatment will carried out at the private Centre for Assisted Reproduction at the Park Hospital in Nottingham, but the local primary care trust has agreed to pay for the family's first attempt, at an estimated cost of £4000. It is thought that the resulting embryos will then be sent to a laboratory in the US for genetic testing.

The so-called 'saviour sibling' treatment involves screening IVF embryos in order to identify those which are both free from thalassaemia, and those which are a tissue-match for the couple's existing affected child. Blood stem cells from the baby's umbilical cord could then be used in a bone marrow transplant for its sick sibling, offering the chance of a permanent cure.

Dr Simon Fishel, who will carry out the IVF part of the procedure, says that while the treatment is expensive, it could cost a lot more to care for a person with thalassaemia. 'The drugs and treatment could cost £1-2 million throughout their lifetime, or around £50,000 a year, so economically it would make sense to look at alternatives' he said. 'Somebody has been visionary enough to want to support this. I applaud it', he told the Sunday Times newspaper. But the decision has also attracted criticism: 'Saviour siblings are not the stuff of routine NHS care', said John Burn, of the Institute of Human Genetics in Newcastle upon Tyne. 'The NHS needs to look at this in terms of national provision and economics, rather than allowing thousands to seep out into screening carried out in the US for relatively few patients', he added.      

The UK's Human Fertilisation and Embryology Authority (HFEA) had previously granted permission for Raj and Shahana Hashmi to conceive a tissue-matched baby to provide cord blood for their son Zain, who also has thalassaemia. Shahana suffered a miscarriage last December, following their fourth attempt, but the couple have said they will continue with the treatment. However, they currently face a second legal challenge to the HFEA's decision, by the pro-life group Comment on Reproductive Ethics (CORE).

Another UK couple, Michelle and Jayson Whitaker, travelled to Chicago last year to have similar treatment to conceive their son James. His cord blood will be used to help treat their other son Charlie, who has Diamond-Blackfan anaemia. The Human Fertilisation and Embryology Authority refused the Whitakers permission to have treatment in the UK, because the couple wanted to use PGD to test for tissue type only.