September 27, 2022

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UK gives thumbs up to “saviour siblings”

The UK fertility watchdog has given a green light to the creation of “saviour siblings” — genetically matched babies created with IVF to save the life of a seriously ill brother or sister. The decision of the Human Fertilisation and Embryology Authority comes after hard lobbying by some IVF doctors. The British Medical Association welcomed the decision, saying that “if the technology to help a dying or seriously ill child exists, without involving major risks for others, then it can only be right that it is used for this purpose.”

However, the decision outraged others. Josephine Quintavalle, of the group Comment on Reproductive Ethics, called it “grossly unethical and grossly undemocratic”. “This decision has been taken behind closed doors without any consultation with the public,” she said.

The donor baby debate began in 2002 with an application to the HFEA by Jayson and Michelle Whitaker to create an IVF baby to save a son suffering from Diamond Blackfan anaemia. It was turned down and the Whitakers went to the US for the procedure. But after further study, all 18 members of the HFEA board have now agreed that the creation of a donor baby, which involves pre-implantation genetic diagnosis of the embryo, does not pose an increased risk of medical, psychological or emotional consequences for the child in its later years.

Although there are no laws against “saviour siblings” in the US, the issue is far from settled. Leading bioethicist George J. Annas, of Boston University, says that there are parents who have considered having a donor baby and then giving the child up for adoption. “That’s too much,” said Annas. “I don’t think it’s actually happened yet, but that is why there is discussion now about establishing a protocol to appoint a patient advocate, independent of the family, to protect the welfare of the child.”