Citizen accessibility to the ethical issues of a participatory democracy
Fertile Vision offers some food for thought on participatory democracy, following the summary report of the 2026 National Bioethics Forum.
The first General Assembly on Bioethics dates back to 2009 during a broad public consultation (70,000 citizens) followed by a report (2/07/2009) and then a parliamentary proposal that will allow the General Assembly on Bioethics (EGB) to be included in the 2011 bioethics law. The latter designates the National Consultative Ethics Committee (CCNE) to organise the EGBs prior to any new bioethics law. This was the case in 2018 for the 2021 law. This is a way of institutionalising and strengthening the links between participatory democracy and representative democracy.
The General Assembly on Bioethics during the first half of 2026 (EGB 2026) was organised by the CCNE, which published its summary report last July. Selon la chronologie habituelle, il appartiendra au CCNE de présenter son avis, attendu avant la fin de l’année.
Fertile Vision recommends reading this valuable report on 10 themes proposed by the CCNE, which also describes the organization set up and the foundations of ethics in the broadest sense of the term (WHO, "One Health") and the challenges of democracy in health for present and future generations.
Themes addressed in 2026
Procreation, addressed in half of all the hearings, is the most requested recurring theme (26% of the hearings), followed by genetics and genomic medicine (16%). Among the new themes proposed by the CCNE, the citizens participating in the EGBs are particularly mobilized on prevention, medical sobriety and fair care, the environment and the climate, AI and digital technology (from 12 to 10%).
Self-criticism of the EGB method
The synthesis report outlines the strengths and weaknesses of the EGBs. These are essentially biases related to participation that are not very representative of the general population, among which 32% of participants are mainly students in Health, regional meetings are almost exclusively organised in cities excluding rural areas, which nevertheless account for a third of the population in 88% of French municipalities, la composition du Comité citoyen (30 membres) quantitativement disproportionnée à une population de 68 millions d’habitants en dépit des critères qualitatifs de désignation.
Despite the limitations stated, the report underlines that this model of participatory democracy applied to bioethics is attracting growing interest, particularly in Europe. Several countries are now drawing inspiration from it to build their own system: Portugal in 2026, Japan for 2027, Ireland for certain themes in recent years.
The two dimensions on bioethics that the EGB 2026 invite us to consider:
- Bioethics and the global dimension of health
- A bioethics that cares about future generations
Through a number of points from the EGB 2026 report, we propose some elements for reflection on citizen accessibility to the ethical issues of a participatory democracy.
Citizen accessibility to ethical issues can be superimposed on that of all determinants of health
It is clear that none of the biological or genetic determinants of health can be dissociated from social living conditions. Situations of increased vulnerability affect all generations, from the desire to have children to the ultimate finitude. Epigeneticism is existential of our social determinants. To use those set out in the summary report: the level of wealth, education, profession, gender or place of living.
Social inequality is combined with health inequality in its most global dimension, as evidenced by the differences in healthy life expectancy. At the individual and collective level, it manifests itself in illiteracy (10% of the population aged 18 to 64 in France according to INSEE in 2022), silent or hidden discrimination, including ageism, non-information or disinformation, which have continued to increase since COVID-19, sources of mistrust and harmful behaviour.
A special mention is made in the EGB 2026 report, about certain overseas territories whose socio-health situation is leading to a collapse in the number of caregivers for the demand for care.
Unequal citizen access to ethical issues is not inevitable but an opportunity for intergenerational solidarity and literacy
The new fact is the awareness of the place of prevention due to the progress of the life sciences. It completes the therapeutic arsenal also resulting from new technologies.
Two examples illustrate this: mental health and natural aging.
Mental health is a different entity from physical health, whose visible, identifiable and accessible devices concern all generations and their places of life, education, business and leisure. The precocity of prevention is a matter of skills that are likely to discern its justification from the risk of unnecessary weakening for a one-off event.
Ageing prevention is about natural ageing and not pathological ageing linked to a chronic disease. Pathological ageing can be addresssed through new technological advances (domitisation) and/or new therapies (cellular or gene). The prevention of natural ageing consists of early detection by means of simple accessible and inexpensive tests (Icope - WHO), of subclinical situations (e.g. cognitive) allowing to adapt his or her living conditions and his or her ability to achieve what each person considers important at each stage of his or her ageing.
Intergenerational solidarity intersects our daily lives. It is not a one-way street. Its different forms range from the youngest to the not so young, but also from the oldest to the not so old. This is evidenced by new forms of shared housing, participation in children's education, in the mutual contribution of active seniors (experience, financial support) and the younger generations (digital divide for the oldest). Similarly, intergenerational solidarity fights against precariousness, isolation in certain urban neighbourhoods and desertified rural areas, and against pollution. The EGB 2026 summary report refers to Edgar Morin's words, made 35 years ago and still as relevant today: "a society can only progress in complexity if it progresses in solidarity".
Literacy 
, the first step of which is literacy, today refers to the ability to read, understand, express oneself through speech or writing in order to interact with others to the point of participating, if necessary, in public debate. Literacy, as defined by many international and European bodies, including the Council of Europe through its guide on health literacy (2023), is the surest way to fight against disinformation and non-information. It is particularly useful in a democracy with national representation and governance.
To some extent, intergenerational solidarity contributes to literacy.
Doesn't citizen accessibility to ethical issues justify, in itself, strengthening the intergenerational link in an inclusive society, respectful of the principles of dignity, solidarity and autonomy, concerned with individual freedom, altruism and protection of the person? In this regard, should not a particular reflection consider the protection of the woman first teacher, first and often last caregiver during her own journey of five or six generations and through her, the transmission to future generations of what justifies literacy and human rights the transmission to future generations of what justifies literacy and human rights ?
