Talk to one of them, “for real”. As part of the “1,000 researchers in schools” operation, 90 students from the Saint-François d'Assises high school in Montigny-le-Bretonneux (Yvelines) benefited from a meeting this Monday with researcher Lucile Hoch.
Trained at the University of Versailles – Saint-Quentin-en-Yvelines (UVSQ), this scientist specializes in genetic diseases within the I-Stem laboratory. The structure, located in Corbeil-Essonnes (Essonne), was born 20 years ago under the impetus of the association AFM–Telethon and Inserm.
“This intervention allows us to address scientific approaches directly linked to the program,” explains Claire Courdier, professor of Earth Sciences and Life (SVT). For young people, it's an opportunity to talk to a real researcher, the one you never see.” “The idea is also to show them how what we teach can be used in real life,” adds Vanessa Gieldon, another SVT teacher.
Three million people affected in France
Captivated by the presentation, the students immersed themselves in the twists and turns of DNA and genetic mutations, the merciless vagaries of heredity and the hopes of new therapeutic approaches. They discovered the incredible progress in gene therapy, this method which consists of delivering “drug genes” into the nucleus of cells.
“Scientists have identified and referenced around 8,000 genetic diseases. They affect more than 3 million people in France, explains Lucile Foch. There are sixty of you in this class today: that means that three of you could be affected. You should know that 95% of these diseases still have no treatment. That’s what our work in the laboratory is: finding solutions.”
Hands are raised in the room. “Is it possible to detect these problematic genes in parents before they have a child? », wants to know a high school student. “In France,” explains the researcher, “except for very rare exceptions, we are not allowed to look in the DNA to see if we have this or that genetic mutation. “It’s a question of bioethics, because it would be akin to eugenics.”
“We don’t have the right to do whatever we want with DNA”
“But if both parents know that they are carriers of a disease, can we go through in vitro fertilization to be able to select healthy genes? » asks another teenager. “In the same way, it is impossible, except for very rare diseases. We do not have the right to do whatever we want with DNA: it is regulated by very strict laws,” insists Lucile Foch.
In France, thirteen genetic diseases are screened at birth, using the so-called “Guthrie” test. The AFM Telethon is campaigning for a fourteenth disease – spinal muscular atrophy, a fatal pathology, characterized by the degeneration of motor neurons – to also be part of neonatal screening. “In Belgium, this disease is detected in all hospitals. The aim of the AFM is to convince the French government. There is some progress since screening is currently being tested in the Grand Est and New Aquitaine,” explains the scientist.
A dizzying figure: a gene therapy injection costs… 1 million euros. “And we must say that in France, we are lucky to have Social Security,” says Lucile Foch. Imagine in the United States, where parents have to start fundraising…”.
A major hope, linked to the “emblematic” disease of the Telethon, Duchenne muscular dystrophy, “one of the most widespread genetic diseases, with an occurrence of 1/4000”. A clinical trial launched in 2021 in France and the United Kingdom is experiencing “encouraging results” for the five children included in the study.
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