France's first 'saviour sibling' stirs ethical debate about biotechnology

France’s first so-called "saviour sibling" was born in a hospital in the Parisian suburb of Clamart in late January, doctors announced Tuesday. The baby, whose blood stem cells will help cure one of his siblings from a severe genetic blood disease, has also opened a new front in the bioethics debate in France.

Born to parents of Turkish origin and named Umut Talha (Turkish for "our hope"), the child was conceived under circumstances that would have been unthinkable only a generation ago.

Umut Talha’s parents approached the hospital in Clamart a little more than a year ago with a serious problem: their two young children were both afflicted with an inherited blood disorder, Beta thalassemia, which requires monthly blood transfusions. The parents knew the hospital was one of only three in France that was developing a treatment for their children's illness.

An embryo was screened and genetically selected from an original group of 12 embryos. It was picked to ensure it did not carry the gene for Beta thalassemia, but also based on its compatibility with the sick siblings. Besides selecting an offspring that would be spared from the disorder, the parents hoped the future baby would also become a donor of the right kind of treatment cells.

In the end the boy was born disorder-free, and his cells were confirmed to be compatible with his older sister, now aged two. Doctors feel confident that Umut’s sister will be cured with the cells from his discarded umbilical cord, and her monthly blood transfusions will be discontinued.

The family have since returned to their home in southern France, but they plan to return to Clamart to undergo the same procedure to cure their other child, Umut’s four-year-old brother.

Hopes and hurdles

French newspapers spread “medicine baby” across headlines on Tuesday. But speaking at a press conference René Frydman, a fertility pioneer and father of the first French test-tube baby, who also oversaw Umut’s case, said he preferred the term “double-hope baby”.

“Medicine baby is a media term invented by people who are against this kind of procedure,” Frydman told reporters. In English-speaking countries, the terms “donor baby” and “saviour sibling” have been widely used in the media.

For Frydman, Umut represents a double hope for his parents: the hope of having a new, healthy baby, and the hope of curing one of their sick children. But other scientists, religious groups and parents beg to differ.

The issue of saviour babies has raised complex ethical debates, and renewed fears of a move towards “designer babies”, or babies whose traits – such as intelligence, eye-colour and height – have been predetermined.

The timing of Umut's birth could be significant. The very law that allows for cases like Umut’s is being revised starting today. Observers say that the existing legislation guiding biotechnology in France may be tightened and restrict research in certain fields, including stem cells.

The country’s standing bioethics law allows for cases like Umut’s. In fact, the government has earmarked 800,000 euros per year for Clamart to practice and develop the procedure.

But Frydman and his colleagues say a lot more needs to be done, complaining of endless hurdles to launch further research and access funds. They regret that France has started a decade after the United States and that the government is still reluctant to give them its full backing.

Umut Talha, France's first-ever "saviour baby" was born on Jan. 26 at Antoine Béclère Hospital in Clamart, in the suburbs of Paris. (Photo: Joseph Bamat) René Frydman (centre), a fertility pioneer and the main doctor in charge of Umut’s case, announced the child's birth on Feb. 7. (Photo: Joseph Bamat) Frydman called on French lawmakers, who are revising existing laws governing biotechnology, to lighten the bureaucratic burden on doctors and researchers. (Photo: Joseph Bamat)