FOR two-year-old Zain Hashmi it is the best of times. Although he had the misfortune to inherit the blood disorder beta thalassaemia, six months ago Britain鈥檚 Human Fertilisation and Embryology Authority threw him a lifeline. His parents wanted another child and chose IVF so their embryos could be tested to rule out thalassaemia. While doctors were doing this, the HFEA ruled it would be fine to choose an embryo with a tissue type closely matched with Zain鈥檚. Blood taken from the umbilical cord of Zain鈥檚 sibling could then be transplanted to treat his condition.
But for Charlie Whittaker it is the worst of times. By sheer bad luck he developed Diamond-Blackfan anaemia, a rare, debilitating genetic blood disorder. His parents also want another child but the HFEA ruled last week that they cannot tissue-type their embryos. That means three-year-old Charlie is condemned to a life of drugs and transfusions.
The difference between these two tales is that in the Hashmi case, testing would benefit the unborn child. But in the Whittakers鈥� case only Charlie would benefit 鈥� not his unborn sibling, who has no more risk of developing Diamond-Blackfan anaemia than anyone else. Here鈥檚 the rub: the rules laid out by the 1990 Human Fertilisation and Embryology Act say the unborn child itself must be at risk of inheriting the condition before parents can select an embryo.
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The HFEA is now at the centre of a storm. Anti-abortion groups are happy to see people stop sliding down the slippery slope to the commodification of embryos. Aligned against them are those who find it hard to believe that Charlie has been denied help on 鈥渁 technicality鈥�. A sick child needs help no matter how the disease developed. Doctors, scientists and ethicists seem split down the middle.
Another way to look at this is that technology has changed the way people view embryos. If a child needs a transplant from a brother or sister who鈥檚 already born, the parents make their decision based on what鈥檚 best for all their children 鈥� donor and recipient 鈥� not just one of them. With the exception that one child is now an embryo, that鈥檚 exactly what鈥檚 happening here.
The problem is that the 1990 Act is out of date. It focuses mainly on the embryo. Twelve years ago, it was inconceivable that tissue from an embryo could save the life of a sibling. The HFEA needs a new framework in which to work: a framework that gives it the flexibility to deal with all the new moral challenges that technology is throwing up.
That鈥檚 not to say that Britain should follow the US, where there are few if any limits on what private fertility clinics can do. Yet it鈥檚 a sad fact that this is probably the only place the Whittakers will find an embryo with the right tissue for Charlie.