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House of Lords deciding on 'saviour siblings'

7 March 2005
By BioNews
Appeared in BioNews 298

The UK's House of Lords is being asked to decide whether a decision taken by the Human Fertilisation and Embryology Authority (HFEA), which allowed the Hashmi family to try to create a 'saviour sibling', was wrong. The highest court in the UK has today listened to the first day of submissions in the appeal case of Quintavalle (On behalf of Comment on Reproductive Ethics) V HFEA, which will continue tomorrow. If the case is successful, it will put an end to the use of tissue typing to create babies who are genetically matched to sick siblings.

Lords Steyn, Hoffmann, Scott, Walker and Brown have heard today that the Hashmi family should never have been allowed to proceed with the treatment. The Hashmis were given permission by the HFEA to use PGD (pre-implantation genetic diagnosis ) and tissue typing in conjunction with IVF in order to have a child that would be a genetic match for their terminally ill son, Zain, who is now six. They hoped that cells taken from the umbilical cord of the new child - dubbed a 'saviour sibling' - would be able to be transplanted to Zain, curing him of beta thalassemia, a rare blood disorder. Zain is kept alive by regular blood transfusions and there is no matched donor for him on the bone marrow register.

Comment on Reproductive Ethics (Core), a pro-life pressure group, took a judicial review action against the HFEA's decision in 2002. The High Court ruled then that the HFEA had acted outside of its remit and that the treatment could not go ahead. But the Court of Appeal, in April 2003, overturned that decision, meaning that the Hashmis could continue with attempts at the treatment. Shahana Hashmi has since miscarried a number of times, but the couple planned to try IVF again early in 2005.

Lord Brennan QC, the lawyer representing Josephine Quintavalle, director of Core, has told the House of Lords that it must decide whether the law, contained in the Human Fertilisation and Embryology Act 1990, allows the HFEA to grant a PGD licence to test tissue compatibility. He contends that the treatment is simply a method of selecting from healthy embryos one, which if implanted and successfully carried by the mother, would produce a child whose tissues would match those of a child needing treatment. It was not a treatment that came under the Act, he said, as it was not a use of PGD for the purposes of helping a woman to have a child. 'We are actually dealing with an embryo being specifically created to act as a donor of tissue for another person', he said.

Shahana Hashmi, speaking to the BBC, said that she hoped the Law Lords would back the judgement made by the Court of Appeal. 'We are hoping they realise that all we are trying to do is ensure that our children have a happy and prolonged life', she said. According to a report in the Observer newspaper, the couple have said that they will take their case to the European Court of Human Rights if the House of Lords rules against them. 'I am certainly not going to stop trying to have a brother or sister who could save Zain', said Shahana, adding 'if that does not work, we will simply go abroad to get the treatment'.

Meanwhile, according to the Times newspaper, it has emerged that the HFEA changed its mind on bone marrow donations from 'saviour siblings' last year. Previous guidelines said that only umbilical cord blood should be able to be taken from tissue matched babies. Josephine Quintavalle said the HFEA had moved 'ethical goalposts' without even informing the public. 'We were categorically promised during all legal hearings that tissue typing would result in only non-invasive applications', she said, adding 'the concept that a baby should be created with this specific purpose in mind goes beyond the comprehension of compassionate and civilised citizens'.

SOURCES & REFERENCES
Lords to hear designer baby row
BBC News Online |  7 March 2005
Secret ruling on 'designer babies'
The Times |  7 March 2005
Tissue Typing Unlawful, 'Designer Baby' Test Trial Told
The Scotsman |  7 March 2005
We'll try abroad if Lords rule 'no' - gene baby couple
The Observer |  6 March 2005
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