Thursday 25April, 2013
How to evaluate a text from an ethical viewpoint:
- That does not even question the fundamental value of the use of tests and confines itself to proposing limits only on condition of use,
- That states that the only barriers are technical performance and cost,
- That distinguishes between thinking about Down syndrome and other genetically detectable pathologies,
- That values the life of a healthy child (saved through a non-invasive test) over that of a child with Down syndrome (inevitably eliminated)
- That hides behind the dogma of "informed choice", causing anxiety and guilt (if the child has Down syndrome, the woman has the "choice" of eliminating the child or condemning it to a life with disability) among all pregnant women?
- In this context, the French National Advisory Committee on Ethics (CCNE) could have saved themselves of the trouble of the few lines relative to the necessary development in our society of welcoming and support for people with disabilities. Who can believe that such recommendations make sense when a moral authority approves a system expressing stigma, discrimination and rejection: the negation of the value of human life with a disability?
- In 2007 Didier Sicard, then chairman of the CCNE, strongly warned without ambiguity about the eugenic tendency of the generalization of prenatal screening of Down syndrome: "The central truth (…) of the activity of prenatal screening aims at elimination rather than treatment: so this screening refers to a terrifying prospect: that of eradication" (Le Monde, February 5, 2007).
On the occasion of the bioethics review of 2011 several authorities and personalities denounced the eugenic tendencies in the prenatal diagnosis of Down syndrome; D Sicard was among them, again making his voice heard: "the screening of Down syndrome has become the standard in France, where the birth of an afflicted child is considered by many to be an error, a blip in a well-defined process. Many think that we can eradicate some diseases by eliminating the sick, in the name of medical progress. They are not extremists, just people who no longer think about it and forget that the people in question are humans" (La Vie, 31 march 2011).
This Opinion 120 missed the opportunity to rethink as a society the validity of a system that leads for medical reasons to the virtual elimination of a population.
For the Jérôme Lejeune Foundation, it is paradoxical to justify what is happening with Down syndrome, and to fear what will likewise happen with other pathologies! The eradication before their birth of more than 90% of children with Down syndrome in France demands further analysis. Meanwhile, companies manufacturing the tests are thanking the CCNE who has just rolled out the red carpet for them to commercialise their products in France. Potential market: 1 billion euros. “A necessary evil” according to the manufacturer.