Génétiquement incorrect (genetically incorrect) follows the interview granted by Didier Sicard, chairman of the National Consultative Ethics Committee, on last 5 February, to the daily newspaper Le Monde. He denounced the generalisation of prenatal screening (DPN) and the selection of embryos: “I am deeply worried about the systematic character of screenings; about a system of unique thinking… the screening reduces the person to a characteristic. This is the way some people wants that Marfan’s disease is systematically screened particularly suffered by President Lincoln and Mendelssohn. Today, Mozart, because he probably suffered from Gilles de la Tourette disease, Einstein and his left hypertrophied brain… the central truth is that the essential of the prenatal screening activity is aiming at deletion and not at treatment. So, this screening opens up a terrifying prospect: the one of eradication. And this is maybe more real in France than in other countries”. Some days after, Nicolas Journet obtained a market place of ideas in the same daily newspaper, in which he opposed, as the “first concerned”, the development of DPN and its application to “his” disease. From there his book was born.
Prenatal diagnosis and eugenics
Nicolas Journet suffers from Marfan’s syndrome and this orphan disease has a permanent threatening of cardiac arrest. From the adolescence, he discovered the lack of treatment of genetic diseases, and above all the cold and accusing look from physicians who consider it as a problem to eliminate and make his parents feel guilty: for medical professionals, he should not have been born. Nevertheless, genetic disease and happiness are not incompatible! Through this speech as distressing as beneficial, he really wants to prove that he has the right to exist, to be happy and even to have children.
A reform of Telethon
In the name of the right to the difference, N. Journet asks a reform of Telethon he accuses to” favour the development of a eugenic policy in France, by granting funds to researches on embryo selection and prenatal diagnosis”. He asks the allocation of Telethon funds is controlled by the State, to prevent this serious drift of public health in France. “In 1935, Carel talked about gas chamber! In 2007, to eliminate the defective ones, we have the prenatal diagnosis, much more urban. And we have something better, the preimplantation diagnosis”.
“The Human and the Animal”
Why to write Human with a capital letter if it will be selected as an animal after centuries of scientific advances? Nicolas Journet is surprised to see how animals are sometimes more cherished than we Humans are: “I am in the same situation as the white Bengal tiger, another natural mutant. It suffers from a recessive disease, the leucism, which gives its coat this particular colour. But it is welcome in zoological parks all around the world. The animals have the right to be different. Their particularity justifies a personal security… from one hand, the genetic defect of an animal is a vital element of the biological diversity of our planet. At the same time, any genetic anomaly in human is to be harshly fought”.
1. Génétiquement incorrect, Nicolas Journet, ed. Danger Public, nov. 2007.