A saviour sibling is a child selected as a result of genetic screening to have some innate characteristic that will help save the life of an existing brother or sister.
The term first appeared in the Journal of Medical Ethics in October 2002 but began to be widely used in the press the following year following the birth of Jamie Whitaker. He had been screened as an embryo by preimplantation genetic diagnosis to provide a genetic match for his brother Charlie, who was suffering from the fatal blood disorder Diamond-Blackfan anaemia (named after Louis Diamond and Kenneth Blackfan of Harvard University, who described the disorder in 1938). It was hoped that stem cells from Jamie’s umbilical cord would cure the condition. Jamie was found to be a perfect match and the treatment was successful.
The case raised deep ethical issues about whether it was ever right to create one life in order to save another. It also contributed to concerns over the creation of what are pejoratively called designer babies, though the latter is a broad term for children created to any sort of parental specification; saviour siblings are specifically created to help an existing child. Concerns have also been voiced about the potential adverse psychological effects on a child born not for itself but to save another.
The UK regulatory body, the Human Fertilisation and Embryology Authority (HFEA), refused permission for the Jamie Whitaker screening; the parents had to travel to Chicago to get it done. Part of the reason for the refusal was that there was a risk that Jamie could also be born with Diamond-Blackfan anaemia, a condition for which there is no pre-birth genetic test. Following legal action in 2003, the HFEA did allow screening for another child, Zain Hashmi, who has beta thalassaemia, but by 2007 no suitable embryo had been conceived.
The HFEA changed its rules in 2004. The term saviour sibling came into the news again in 2005 in connection with Zain Hashmi, whose situation was taken to the House of Lords as a test case. The law lords ruled that it is lawful to use modern reproductive techniques to create a saviour sibling.
In 2007, a committee of both houses of the UK Parliament was considering a draft bill on human tissue and embryology regulation. In July, it recommended that screening should be permitted to provide a sibling match for children suffering from serious conditions as well as life-threatening ones.
Taranissi was the doctor who lobbied the HFEA hardest for permission to help couples conceive a “saviour sibling” — a baby genetically matched to provide life-saving cord blood that could be transplanted into a sick brother or sister.
Guardian, 30 Jun. 2007
Any move to make it easier to create a saviour sibling will anger campaigners who argue that genetic screening of embryos for “useful attributes” turns children into commodities.
Daily Mail, 1 Aug. 2007