French investigation into babies born without upper limbs

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The whistleblower who raised the alarm over clusters of babies born with missing upper limbs in France has welcomed the government’s decision to set up a national scientific committee to search for a cause, reports The Guardian.

Emmanuelle Amar said the move, announced by the health ministry, vindicated her work after she had been “dragged through the dirt”, and more importantly recognised the concerns of the families affected.

The report says Amar, director of the independent Remera health register in the Rhône-Alpes region, was told after she went public that the register was having its funding withdrawn and she and her team were losing their jobs. They have now been given a reprieve. “As soon as they announced they’d be paying for our register after all, we knew our work had been validated. It’s a sign they have recognised the quality and pertinence of our work.”

However, she said she was still angry at how she and her team had been treated by the country’s health authorities. “At the time we raised the alarm we were dragged through the mud, told by the health authorities our concerns were unfounded,” she is quoted in the report as saying. “The only people to support us were the scientists and the media. The officials, bureaucrats, just wanted to protect themselves. They tried to kill off the register and suffocate the story. It’s incomprehensible but it’s evidence of a kind of arrogance in our institutions.”

Amar raised the alarm after eight cases were reported of infants born without hands or arms in her area. She accused the health authority of trying to bury what she called a health scandal. A further 11 suspected cases have since come to light in the region.

The report says the French health body Santé Publique France (SPF) prompted criticism two months ago when it announced it was closing its investigation into clusters of babies born with missing upper limbs. Three clusters have been reported in different regions: Brittany, Loire-Atlantique and Ain. SPF said the first two appeared to be above the national average, but dismissed the cases in the Ain, covered by Remera, as probably down to chance.

After pressure to reverse this decision, Jérôme Salomon, director general of health, said there would be a coordinated effort involving health and environment professionals as well as scientists that would “examine all leads”.

The report says the new committee, headed by an independent “high-level” scientist, will examine food and environmental factors such as pesticides as well as animal feed, after reports of calves being born with similar abnormalities, but Salomon added that “no hypothesis is being ruled out”. He said: “We are completely mobilised to answer the worries and the questions families are asking. We need time to study the cases and speak to the families.” He said the new committee had been asked to produce a first report by the end of January next year and a final report by the end of June. The results would be given to families, he added.

Salomon admitted that just under 20% of France is covered by registers detailing congenital malformations in infants. Salomon said all those working with pregnant women and new-borns, including obstetricians, paediatricians and radiologists, would also be contacted and asked to flag up any new cases.

Amar said she was disappointed SPF had not been sanctioned for closing its investigation but said it was now more important to concentrate efforts on finding answers for the families of affected children. “There are families whose children go to a school where there are several youngsters without arms and they are expected to believe it is normal,” she said. “My hope now is for their sake we can now find out what is causing this. I don’t want an apology, I just want to get on with the work. The sad thing is that if they had listened to us in the first place, we might have stopped some of these cases.”

The Guardian report

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