25 years of Telethon: the dark side

Publié le 30 Nov, 2011
This year the 25 years of the Telethon must not make forget the critical analysis of this event installed in the French media landscape. Recently, the biologist Jacques Testart renewed his denunciation of the eugenic selection performed, among others, with Telethon donations. An analysis of the AFM promotional document (1), “25 spectacular advances for the benefit of the largest number of people“, published this year for the 25th issue, strengthens this critic.
Transgressive researches


In one of the sections of this document, called “the revolution of biotherapies“, the AFM promotes the “spectacular” advances that represent, according to it, the researches of heart and skin cell therapies from human embryonic stem cells. For heart therapy (treatment of post-infarction heart failure), the association mentions the perspective of a future clinical trial. First problem: this announcement is regularly made for 2 years when in reality no authorization is yet granted. Second problem: these researches that the AFM promotes differ from the prescriptions foreseen by the law. Indeed, according to the legislation in force when these works started, the research on the human embryo and the human embryonic stem cells is prohibited and can only be subject to an authorization, by derogation, when “allowing major therapeutic advances” and not being able “to be pursued by an alternative method of comparable effectiveness“. Yet, here it deals with fundamental researches: they have no validation to pass to clinical trial and thus do not have the requirement foreseen by the law to allow “major therapeutic advances“. Moreover, alternate works for the treatment of heart failure, using non-embryonic stem cells, showed a therapeutic efficacy.


Concerning the cell therapy of the skin, the AFM emphasizes the reconstitution of a human epidermis from human embryonic cells, which was highly covered in the media in 2009. The researcher Marc Peschanski had promoted these works dedicated to treat epidermolysis bullosa, a rare genetic disease of the skin, as well as serious burn victims. Yet these researches were doubly transgressive. They were only located, here too, on the fundamental level. Moreover, several teams moved towards treatments from non-embryonic stem cells. The American professor John Wagner had yet presented positive therapeutic results for treating epidermolysis bullosa. In France, Pr. Jean-Jacques Lataillade obtained a reconstitution of the skin thanks to injections of umbilical cord or bone marrow stem cells.
We still do not know how to cure but we learn to sort efficiently… 


Under the title “the genetic revolution“, another section of the document of the AFM mentions the improvement of prenatal diagnoses obtained by discovering the genes responsible for the diseases. The AFM welcomes this advance setting back “the diagnostic error“: “The genetic counseling and the prenatal and pre-implantation diagnoses offer the possibility to families to grow in full knowledge. The hope and the life take over!” For couples susceptible to transmit a genetic disease, these diagnoses make possible to identify healthy embryos or fetus and to destroy the ill ones: thus, behind the enthusiastic terms of the AFM, there is the reality of a genetic selection of children to be born which is performed. In an article called “Téléthon : le plus cher cabaret du monde ! (2) , Jacques Testart rejects this eugenic sort. He denounces also the indecent character of this “mass spectacle” and “outrageous promises” from which is made every year the collection of millions of euros “in the name of the unavoidable equation: money=research=cure“. He observes that the next curing promises, constantly repeated, remain far away from the difficult reality of the serious progressive diseases, as “the genetic therapy seems not to be a competent strategy to cure most of the genetic diseases“. He reports the words, published on the Web in 2008, from a shocked muscular dystrophic person for whom the false hopes provided by the Telethon “is really similar to mass manipulation“. Jacques Testart also criticizes the hypocrisy of the media presentation of “bébéthons“, dedicated to validate the success of the operation. Born from couples who carry genetic affections but exempted from these diseases, in fact these children have not been cured as they have never been ill. They were subject to a selection: “the advances of the genetic diagnosis allowed identifying the “normal” embryos or fetus conceived by “risky” couples, and this way eliminating the other. We still do not know how to cure but we learn to sort efficiently… with the money of those who gave to be cured“.


(1) Association française contre les myopathies, Telethon organiser
(2) Jacques Testart website: http://jacques.testart.free.fr/index.php?post/texte897

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