Telethon: festive compassion to the detriment of ethics

On December 4 and 5, the 29th edition of the Telethon takes place, the slogan of which is, this year, “Innovate to cure”. The Telethon mobilizes the French and reveals their concern to help the most vulnerable, in this case people with neuromuscular diseases, for example myopathy.

THEAssociation française contre les myopathies (AFM) presents the collection of donations as a necessity to help people affected by these diseases, an aid articulated between genetic research and assistance to disabled people. A research whose ethical problems are ignored by the traditional media.

On the AFM website, we can read a summary of the festive aspect of the Telethon : “Nearly 5 million French people participate in the Telethon each year. The first weekend of December, they attend one of the 20 sporting, cultural, fun or gastronomic events organized in more than 10 towns in mainland France and overseas, as well as in “key” places around the world. Sales of pancakes, solidarity purchases, sporting challenges, dance evenings, competitions of all kinds, the Telethon activities are an opportunity to party all over France and around the world. The sums collected on this occasion represent approximately 40% of the total amount of the Telethon. »A playful face to facilitate the transmission of a message marked with seriousness at the risk of avoiding the ethical scale.

For several years, moral criticisms emanate from scientific circles, Christian or not, towards the Telethon, without much media coverage. But also myopaths annoyed by the sterile promises and the monetization of tragedy. The Lejeune Foundation calls on the French and the AFM as to the destination of the donations that the festive hides; Professor Testart, “father” of the first French test tube baby, and honorary research director at INSERM, described the Telethon as “ most expensive cabaret in the world "; in 2007, the former ski champion, Raphaëlle Monod-Sjöström, resigned from her position as Telethon godmother for the Rhône-Alpes region after taking a closer look at the actions of the AMF, and joined the Committee to save the ethics of the Telethon. What is it all about?

Behind the festive, the necessary reflection

If the Telethon donations make it possible to maintain budget lines to finance the purchase of adapted wheelchairs or the remuneration of home helpers, their destination is not necessarily in coincidence with the wishes donors. First, because they do not always wish to finance biomedical research on the human embryo proposed by the AMF; secondly because the information is not really made on the genetic selection which makes it possible to rule out embryos marked by defects, in this case those linked to neuromuscular diseases.

On the one hand, donors do not necessarily wish to finance biomedical experiments because research on embryonic stem cells is not without raising serious ethical problems. This involves performing experiments on human embryonic cells in order to generate new tissues or even organs. This concerns so-called supernumerary embryos obtained in the context of fertilization vitro, but which are not the subject of a parental project. Advocates of this research present their prospects as promising.

The potential of stem cells depends on their age. Thus, during the first days of the development of the cell mass, and until the 4th day, after the division of the fertilized egg, the cells are totipotent, that is, able to differentiate indifferently and to reproduce. without limit, therefore to reproduce all the cells of an organism. There is then no cellular specificity yet, and a skin cell can for example differentiate into a neuronal cell. We can see the reason for the interest shown by the promoters of a reallocation of Telethon donations. However, prior to the experiment, cells are removed from an embryo and the latter is destroyed.

Announcement effects before various editions of the Telethon make it possible to cover up the ethical and scientific truth to the point of disguising it. Thus, on October 27, the AFM and the I-Stem Institute of Stem Cells, associated with it, declared to the press that a patient participating in a phase 1 clinical trial protocol at the Georges Pompidou hospital since October 21, 2014 was doing well and there were no complications. The patient concerned had received a transplant. However, the purpose of phase 1 is to assess the toxicity of the treatment and not to obtain a therapeutic effect. ; moreover, at this stage of the protocol, the test must have involved 6 patients before it can be concluded as to its toxicity. However, only two patients were transplanted (the second, 82 years old, in February), and a period of 5 years must be respected before giving results concerning the toxicity or not of these transplants.

On the other hand - and always in this spirit of distortion of the truth -, donors would not necessarily be in favor of the Telethon if they knew that it is in favor of preimplantation diagnosis, that is to say of screening and of genetic selection. In the context of medically assisted procreation, several oocytes are fertilized; then, a genetic sorting is carried out to eliminate those carrying the defects which the parents do not want. After ten years of exhibiting children with neuromuscular diseases on television sets, the Telethon began to present "bebethons" by claiming to viewers that it was their donations that had made it possible to overcome the disease in these children. . However, there too, as during the press conference regarding the clinical trial protocol, the Telethon, the AFM and the I-Stem are in the disinformation since the children are not unscathed from having been treated. but that of not having been refused thanks to the fact that they were free from the diseases sought.

In any case, the Telethon's presentation of these alleged successes in gene therapy is more of the seriousness of a sensationalist magazine than of a very popular scientific journal that tries to provide as much information as possible. The “Seen on television”, the compassionate and the festive dismiss the questioning: not to support the Telethon, even to criticize it, it would be heartless.

This staging led Raphaëlle Monod-Sjöström to leave her habit of regional Telethon godmother when, discovering certain criticisms, she became interested in the question. Godmother of an affected child, the former ski champion says: “As a sportswoman, I was very touched to be asked to sponsor the Telethon in my region. It is a magnificent adventure: I want to help those who are struck by these diseases and encourage research to cure and cure. When I heard reviews on the radio, I wanted to know more. I discovered that embryos were used for research. Something shocked me a lot because of the friendship that was forged with young patients I met for the organization of the Telethon. I realized that I might not have the joy of knowing my godson today if the practices of embryo sorting had existed twenty years ago. "

In 2014, the Telethon had raised more than 89 million euros. If you are keen to help research from a perspective of respect for human beings, you can support the Lejeune Foundation, of Christian inspiration founded by the geneticist Jérôme Lejeune. Through the Jérôme-Lejeune Institute, the Foundation offers scientific research with a view to discovering treatments to improve the cognitive capacities of people with Down's syndrome, as well as curative support.

JD

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