By Steve Connor
The parents of the four-year-old child at the centre of a British court case over so-called "designer babies" made an emotional appeal yesterday for a controversial life-saving treatment to go ahead.
On the eve of a court appeal, Raj and Shahana Hashmi said that time was running out for their son, Zain, who will die from an inherited blood disorder unless they are allowed to select an embryo with a perfect tissue match.
The High Court ruled last December that the Human Fertilisation and Embryology Authority (HFEA) did not have the right to sanction the treatment, which would involve testing an IVF embryo to ensure that it was free of the disorder as well as being a perfect match for Zain.
The aim was to implant the embryo into Mrs Hashmi and allow a normal pregnancy and birth but to use vital stem cells from the newborn baby's umbilical cord to transplant into Zain, who suffers from beta thalassaemia, a disorder that prevents the formation of healthy red blood cells.
Doctors had failed to find a suitable bone-marrow donor for Zain and Mr and Mrs Hashmi felt that they had exhausted all other possibilities, including trying to have tissue-matching babies conceived naturally.
Mrs Hashmi, 38, said: "We believe strongly that what we're doing is the right thing for Zain. He has a right to life and we are here to ensure that he gets that right."
Mr Hashmi, 40, said: "Zain has just turned four years old. To be successful he needs to have this done by the time he is five-and-a-half."
If the appeal hearing is unsuccessful and there are "no other options" then "unfortunately Zain will probably die", he said.
Having failed to find a donor, the Hashmi family applied to the HFEA for permission to use IVF to screen and select an embryo that would have the correct genetic match to allow cells from its umbilical cord to be used to cure Zain.
The HFEA granted that permission last February but in December Josephine Quintavalle, a pro-life campaigner acting on behalf of the group Comment on Reproductive Ethics (Core), won a High Court ban on the treatment.
Ms Quintavalle had argued that this type of screening was "ethically objectionable" and would mark the beginning of "designer babies".
In a landmark case, Mr Justice Maurice Kay ruled that the HFEA had no legal power to license embryo selection by tissue typing to help sick siblings. He said the HFEA had overstepped its powers and had not correctly understood the Human Fertilisation and Embryology Act 1990.
The judge said the authority could only grant licences authorising certain treatments for pregnant women "for the purpose of assisting women to carry children".
Mr Hashmi said selecting a suitable IVF embryo was the last chance for Zain. The couple have a younger son who is free of the disease but who was not a suitable match for his brother, and another natural pregnancy was terminated after it was discovered that the foetus had thalassaemia.
"We are just a normal couple. We have tried everything. Of course we will love the child. We are not using a child, we are only taking the stem cells. Zain would love the baby. We would love it even more," Mr Hashmi said.
Suzi Leather, who chairs the HFEA, said the Hashmi case fulfils all six criteria laid down by the authority to allow prenatal genetic diagnosis and tissue typing of IVF embryos.
These include that the condition should be severe or life-threatening; that the embryos themselves should be at risk of the same condition and so could benefit from selection; and that the intention is only to take cells from the umbilical cord rather than from the baby itself. "The HFEA is very precautionary indeed," Ms Leather said.