In the small world of bioethics, the announcement had been expected for several weeks. It is a decree published in Official newspaper which clarified its outlines: since April 24, the National Consultative Ethics Committee (CCNE), partly renewed every two years, has welcomed 19 new members out of a total of 45, from various professional, scientific or intellectual backgrounds , having in common an interest in ethical issues. While should open, in the first weeks of the new mandate of Emmanuel Macron, a citizens’ convention on the end of life, the new composition of the body is particularly scrutinized.
An opening to the associative world
The great novelty of this 2022 vintage? “Opening up to the associative world”, observes Emmanuel Hirsch, professor of medical ethics at the University of Paris-Saclay. This provision, which appears in the bioethics law of August 2021, was encouraged by the president of the CCNE himself, Jean-François Delfraissy. Objective for the body: to have closer links with civil society. Concretely, as established by the text of the law, “Six representatives of associations of sick people and users of the health system, associations of disabled people, family associations working in the field of the protection of the rights of persons” have been designated.
→ DEBATE. What is the National Ethics Advisory Committee used for?
Among them, Yvanie Caillé, founder of the Renaloo association, which brings together kidney patients; the anthropologist Didier Fassin, specialized in the links between health and precariousness; Noemie Nauleau, “an exceptional person in the field of disability” according to several people contacted by The cross ; Sylviane Giampino, psychologist and psychoanalyst, vice-president of the High Council for the Family, Childhood and Age and author of a landmark report on early childhood; or even Cécile Duflot, former housing minister and current director general of the anti-poverty association Oxfam.
Emmanuel Hirsch welcomes the “high quality of newcomers”, from “points” in their field, but regrets that there are not more actors ” ground “. “All this remains quite institutional “, he notes.
The opening to the associative sector, however, delights Gérard Raymond, president of France Assos Santé, a collective of associations of health users. “We cannot build an ethical, democratic and united health system without carrying the voice of all the players in this system, including patients”, he pleads. All the more so since the Covid crisis, which has shaken the general public’s view of health authorities and which has highlighted new issues, particularly around mental health and old age.
The subject of nursing homes at the heart of future debates
Among the new members of CCNE, there is also a child psychiatrist, Professor Angèle Consoli, former member of the Scientific Council, or Séverine Laboue, director of Ehpad in Hauts-de-France. The latter seems to be unanimous for its ability, in particular, to integrate families and loved ones in the care of residents. Expertise expected while “Aging policies should be on the agenda for the new five-year term”, deciphers David Gruson, holder of the health chair at Sciences Po.
→ THE FACTS. Ehpad: launch of an Old Age Observatory, for independent monitoring
At the same time, some members of CCNE have their terms of office renewed, such as gynecologist-obstetrician Alexandra Benachi, Protestant theologian Marion Muller-Colard or Claude Kirchner, a great digital expert. Others, such as the philosopher Frédéric Worms, who joined the CCNE in 2013, have reached the end of their two terms of office and are leaving the body.
What themes await the body? “Neurosciences, genetic questions, digital technology, ethical issues related to the environment”list Emmanuel Hirsch, who points, in this regard, to the appointment of paleoclimatologist Valérie Masson-Delmotte.
But one of the most awaited notices obviously concerns the end of life. The body had self-seized, in November 2021. The text, practically completed, will be submitted for validation to the entire CCNE – that is to say also to members who did not participate in its elaboration –, at a future plenary assembly… Without knowing the impact that the new designations will have.
→ ANALYSIS. End of life: Emmanuel Macron’s citizens’ convention, a method that is debating
The text may in any case be modified, amended and could be validated at the end of June or the beginning of September. It is this same CCNE which will be responsible, under the aegis of the Economic, Social and Environmental Council, for enlightening citizens during the citizens’ convention on the end of life promised by Emmanuel Macron.
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What is CCNE?
– Creation. The CCNE was created in 1983, after the birth of the first “test-tube baby” and the awareness of the new questions that this first scientist raised.
– Composition. Composed of 45 members (plus a president), including scientists, personalities belonging among others to the Council of State, the Court of Cassation, the Academy of Medicine or large families “philosophical and spiritual”the instance wants to be “independent and multidisciplinary”.
– Working. The CCNE can be seized by the President of the Republic, the Presidents of the Assemblies, the members of the government. It can also take up a question asked by a citizen or by one of its members. Its opinion is only advisory.