The Etats Généraux de la Bioéthique are being held until May with more than 60 debates organized throughout France. The aim is to feed into the revision of bioethics laws that the government is due to carry out at the end of 2018. This is an opportunity to identify the population's expectations and to capture opinions and desires for the future, whether in terms of procreation, regenerative medicine, predictive genetics or the new consideration of animals and the living world.
On could call it a Bioethlon. The Etats Généraux de la Bioéthique (EGB) launched on 18 January is a major challenge. The aim is to involve citizens in a national reflection on the life to come, the life we give or the life we tinker with in the labs... A vast project decided by Professor Jean-François Delfraissy, president of the National Consultative Ethics Committee (CCNE) for the life sciences. For him, who worked so much with patients' associations when he was director of the French National Agency for Research on AIDS (ANRS), this is a huge undertaking."the opinion of citizens is essential to strengthen our common vision.".
This exercise is part of an agenda, that of the revision of the Bioethics Laws that must be carried out every seven years, according to the law.
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As coordinator of this process, the CCNE proposes a most pragmatic method, leaving it to the regional bioethics spaces to invent their own approaches and themes for debate. The contributions will be the subject of a synthesis report to be submitted by the CCNE to the Parliamentary Office for the Evaluation of Scientific and Technological Choices (OPECST) at the end of May. Within this body, Jean-François Eliaou, a sixty-year-old doctor, newly elected under the colours of the Republic on the move, will coordinate the evaluation of the 2011 law, with the CCNE's full report including the assessment of the EGB. He will start the OPECST's own hearings on bioethics very soon. It is only after this vast mobilization, that the government will be able to propose its bill inspired according to its will of the considerations pointed out by the EGB.
The regional ethical spaces propose to lead some 60 debates using a wide variety of rather informal approaches (conferences, round tables or debates). They have been asked to plan to involve secondary school and university students. The most dynamic are Alsace, known for its European Bioethics Forum - this year devoted to " Produce or reproduce " from 30 January to 4 February 2018, but also Occitania, which has chosen to address in particular the new challenges related to digital technologies, e-health and "big data". The Ile de France Ethical Area with its 25 years of experience has a dense programme: at the Ministry of Higher Education, our responsibilities towards future generations will be discussed (20 April), while in June, the ethics of science and technology will be addressed. The Regional Conferences of Health and Autonomy (CRSA) will be
associated with all of these events.
The fields to be explored are very diverse: assisted reproduction, embryonic development, stem cells; genetics and genomics; organ donation and transplantation; artificial intelligence and robotics; health data; neuroscience. Only two regions have planned to discuss "Health and Environment", New Aquitaine and Guadeloupe, which is facing chlordecone pollution.
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To support the dynamic, a website capable of collecting contributions will be opened at the end of January: https://etatsgenerauxdelabioethique.fr. A citizens' committee of about 20 people - a representative sample of the French population - will be selected. The CCNE is giving it a role as a critical observer of the process and the methods used, no doubt to avoid the mess of the 2009 Citizen Committee. It will receive, upstream, an insight into the stakes of the bioethics debates and will also be able to take up one or more topics of debate, which it will choose. It will submit to the CCNE its opinion and recommendations, which will be included in full in the CCNE's final summary report. The Biomedicine Agency will have to submit a report on the evaluation of the 2011 Bioethics Law. And the CCNE itself will conduct around 100 hearings. The organizations or representatives of the cults who want to be heard must make a request.
President Delfraissy admits to a certain anxiety at the start of this Bioethics Etats Généraux. « There are two possible pitfalls, the confiscation of the debate by the extremes and the lack of interest of the population". On the first point, we know the points of attachment - particularly in ABM - with very contrasting groups such as The future for all, ready to fight.
With regard to mobilization, surveys have been carried out to capture the perception of bioethics by the general public. These show that the French understand bioethics as the relationship with the living, the way of taking care of life as a whole. This is why the CCNE encourages the development of reflection on biodiversity and the preservation of a habitable earth. "We hide behind the WHO definition of health which speaks of 'complete physical, mental and social well-being'." says Pierre-Henri Duée, co-author of the latest NEAC report on "Biodiversity and health: new relations between humanity and the living world ". Given that we are faced with 8 million deaths a year due to air pollution and that new epidemics are emerging as a result of our new lifestyles, questions of responsibility need to be clarified".
The wise men are aware of an urgency, that of our lifestyles that have become unsustainable. They are proposing an unprecedented bioethical moment, which concerns much more than doctors and health professionals. Will they go so far as to question the economic and financial players involved in artificial intelligence, biotechs or geoengineering? In any case, in April 2018, they will present their long-awaited report on the new CRISPR-Cas9 publishing techniques, which will have a nice echo chamber!
