www.genethique.org

Bioethic information and analysis newsletter

Following Letter

N°71 - November 2005

At this time of year, many of you are asking us questions about the Telethon. Our purpose is not to doubt the goodwill of the numerous participants or the success of some of the Telethon achievements. However, we believe it is important to answer these questions in a transparent manner.
 

The selection of embryos for their genetic criteria
Scientist teams funded by the Telethon are using the embryo selection method based on their genetic characteristics called pre-implantation genetic diagnosis. When a couple carries a genetic disease, they are offered an in vitro fertilisation, then select, out of the embryos obtained, those that carry the disease and those that do not. Only the embryo that does not carry the disease is implanted again, the others are destroyed. Therefore the children who survive this embryonic selection process are not cured, as they were never ill. And the sick embryos are not cured either, as they are destroyed. Thus little Valentin was born (a healthy child of course) and his brothers and sisters died at the embryonic phase. This announcement fuelled the media machine during the 2000 Telethon campaign¹.

Research using aborted foetuses
Research on Parkinson and Huntington diseases leads to transplantation of the neural cells extracted from aborted foetuses. 3 to 10 foetuses are generally needed for one patient², and they are foetuses whose neural cells are not yet dead so that the transplantation is successful. A trial for Huntingdon disease was carried out in 2000 on 5 patients, another one started in 2002 on 100 patients and is apparently ongoing³. In 2002, the team announced that they needed more fœtal cells, were “still looking for new cell sources for transplantation purposes and hoping to be able to experiment on human embryonic stem cells⁴.” This research is part of several programmes that are highly publicised by the association.

The use of embryos for research
In 2004, the Telethon made it possible to finance a Centre for the study of embryonic stem cells. The objective is to create a research Institute dedicated to embryonic stem cells, I-STEM, which will be the first large-scale French testing centre for the research on human embryos. For the record, research on human embryos does not mean curing sick embryos. It means removing cells from the embryo (which is then destroyed) to use them as research material.

Importing embryonic cells for research
Certain scientists were eagerly waiting to be able to work on “supernumerary embryos, not for reproduction purposes”. The Bioethics Law of 2004 now authorises this kind of research. But, as the enforcement decrees are yet to be signed, research scientists could not use these French embryos. Certain scientists, funded by the Telethon, were granted special authorisations in February 2005 by the Ministers for Health and Research, to import embryonic cells so that they could start their research straight away within the framework of the I-STEM⁵ project. Another authorisation to import human embryonic cells was signed in September 2005⁶.
 

“AFM’s policy has always been to comply with the Law and nothing but the Law”⁷.
The influence of the French Myopathy Association (AFM), Telethon organiser, has become an important one in the State’s research policy, but this power isn’t sufficiently or ethically counterbalanced. The only ethical claims made by AFM are the compliance with the Law, even when the Law does not respect human life before birth. All AFM has to do is to direct the Law to fit its objectives, which is exactly what it does…

Thus AFM has been lobbying the State to obtain the enforcement decree of the pre-implantation genetic diagnosis.
Eric Molinié, former President of AFM, explains: “For example, in 1997, we voted a resolution on pre-implantation genetic diagnosis to ask the Government to pass the enforcement decrees of the related bioethics law”⁸. In 2000, following the birth of the first baby using this method, the association was delighted: “this result (...) is the reward of AFM’s political activism on this issue”⁹.

AFM’s method to authorise research on embryos
A “patients conference” was organised in June 2002, on stem cells and human cloning. The idea was to confront scientists with a 12-person panel, patients or parents of sick children. All the guest scientists were in favour of research on embryos and a number of them were in favour of embryo cloning (also called therapeutic) for research. They presented the patients with possible therapies obtained using embryonic cells and human cloning. At the end of the conference, the patients were required to express their expectations and write their recommendations to the public, the media and the members of Parliament, in order to get bioethics laws reviewed. What was the content of these recommendations? The request to authorise research on embryos and human cloning for research purposes, of course. In August 2004, the members of Parliament passed a Law authorising research on supernumerary embryos.

AFM is already lobbying for human cloning
The patients’ panel of the consensual conference already concluded, back in 2002, that is was “not legitimate to prohibit or offer a moratorium on therapeutic cloning¹⁰. Pr. Peschanski, funded by the Telethon, considers cloning as “a new and exciting research area"¹¹. A bill seeking to authorise the cloning of embryos for research purposes was registered with the Senate and another one with the National Assembly. This one is supported by four French scientists, including Pr. Peschanski, who said: “now we need to change the Law very quickly because if we do not, we will be five years behind. We really need this technique while it is viable¹²”. A study group working on the application of biotechnology on genetics and ethical issues has just been created at the National Assembly...

 

Would the Telethon enjoy such wide support if people knew that:
- abortion survivors – “babythons” – were used to appeal to the generosity of the public.
Pr. Jacques Testart had already warned: “The triumphant staging of certain victories over unhappiness is an argument that has nothing to do with scientific rigour. The Telethon first introduced myopathic children, appealing to the solidarity of television viewers. Then a few years later, we discovered on our screens children who were happy to be normal, whose existence was claimed to be a consequence of the generosity of the public: these “babythons” were in fact the survivors of the antenatal diagnosis, which had shown them to be normal in utero despite being conceived by “exposed couples¹³”.

- the disabled react to what they perceive as a form of aggression against them.
“If I am told that the French Myopathy Association is going to focus on antenatal screening in order to promote antenatal elimination, I will stop giving money and rallying right now”. “I have grave doubts about “babythons”, as people believe they have been cured by research whereas they are the consequence of a selection process; therapeutic abortion has eliminated many others. Hence the question: What if my parents had aborted me?”. “I suspect the purpose of scientific research isn’t to promote therapeutic research but to eliminate the patients”. “As I was watching a Telethon show, it came to me. There was always a string of beautiful looking babies they called “Telethon’s miracle babies” (…) In the book, (on the creation of Généthon) it said that thanks to scientific progress, it was possible to prevent children from suffering by making sure they weren’t born… I was outraged I had sent money for this¹⁴".

- the birth of Valentin, following embryonic selection, was misrepresented as a great therapeutic success.
It has been said that “among AFM’s great therapeutic achievements¹⁵” was, among other things, «the birth of the first healthy child in France following a pre-implantation genetic diagnosis¹⁶”. However, Valentin is a survivor of embryonic selection. He was never cured because he was never treated because he was never sick. These untruths have been widely publicised. Public opinion is convinced that Valentin owes his good health to the Telethon.

- the “patients conference” organised by AFM to produce recommendations in favour of research on embryos was staged.
What politician, what media, could resist the request made by the parents of sick children or by the children themselves? But where is the objectivity in the recommendations made under the influence of scientists anxious to authorise research on embryos?

Not many people know that AFM is currently lobbying to amend the 2004 bioethics Law and authorise human cloning. Do we have to wait for another “patients conference” and the invitation of the Korean cloning specialist to influence members of Parliament before we take action?

1- AFM Press Release, 30/11/2000
2 - Rapport de l'Office parlementaire d'évaluation des choix scientifiques et technologiques du 24/02/2000
3 - www.afm-france.org, les essais cliniques en cours soutenus par l'AFM, mise à jour septembre 2005
4 -  Repères (journal de l’INSERM), march 2002.
5 - Le Monde, 18/02/05 ; Le Figaro, 19/02/05 ; Actualités de l'Institut de Myologie, 04/03/05 (in Orphanews)
6 - Le Quotidien du Médecin, 02/09/05
7 - Eric Molinié, ancien président de l’AFM, in La bioéthique, foire aux fantasmes. 2001
8 - id
9 - AFM Press Release, 30/11/2000
10 - Publication des recommandations du panel, 27/01/03
11 - Le Monde, 11/02/05
12 - AFP, 20/05/05.
13 - Jacques Testart, Des hommes probables, Seuil, 1999
14 - Danielle Moyse et Nicole Diederich, Les personnes handicapées face au diagnostic prénatal, Erès, 2001
15 - Le Monde, 09/12/00
16 - Communiqué de presse AFM Téléthon 2000