Background, initiator and participants

France has had specific legislation on bioethics issues since 1988, and since 2009 it has involved the public in public debates. Since 2011, the French law on bioethics stipulates that the National Consultative Ethics Committee (CCNE) organises public debates and consultations within the scope of bioethical questions on medical and/or research practices affecting the human body and the embryo. The first National Consultation (les États Généraux) – as provided for in the 2011 Bioethics Law – was held from 18 January to 30 April 2018.

The question

The CCNE defined nine themes for debate, 7 scientific and 2 societal questions, namely:

• Research on human embryos and human embryonic stem cells,
• genetic testing and genomic medicine,
• organ donation and transplantation;
• neurosciences,
• health data,
• artificial intelligence and robotization,
• health and the environment,
• assisted reproduction,
• endof-life care.

These topics were chosen because they are at the core of the Bioethics Law and are important in the light of recent developments in the field of bioethics. Although the two last themes did not follow from the Law, the CCNE decided to promote debate on these topics because of their relevance in society and to benefit from the opportunity provided by the National Consultation to hear the public’s views.

Method

In March 2018, an “Introduction to the themes of the National Consultation” was organised for around 60 journalists. Both the national and regional media were engaged throughout the National Consultation to report on the events and debates held across the nation. In some cases, on sensitive subjects, the press were deliberately left unaware of the timing as not to have a negative impact on the openness of the participants in the debate.

The CCNE created a Citizen Committee to consider the process of the debate and to choose two themes for consideration in greater depth: end-of-life and pre-conception genetic testing. The exercise resulted in three "Opinions" that were published in the CCNE synthesis report.

Besides the Citizen Committee, the CCNE organised the following as part of the public debate:

• 271 regional gatherings organised by The Regional Forums for Ethical Reflection (Espaces de réflexion éthique régionaux ERER); 21,000 people participated in these meetings;
• a website was created where individuals could provide contributions online. Between February and April 2018, a total of 183,498 single visitors logged on to the website with 29,032 people providing 64,985 contributions to the consultation. The themes that attracted the most attention were "Procreation and Society" and "Endof-life Management", representing 69% of total contributions.
• 154 hearings between February and May 2018 involving 400 associations and scientific institutions, as well as organisations representing philosophical or religious interests.

Notable features and lessons learned

In this example, it is evident that political commitment helped to support the realisation of a very broad engagement of the public in debates on bioethical issues.

The example also shows how different methods can be combined to advance the informed debate on different and difficult topics.

A particular feature was keeping secret the venues and dates of the Citizen Committees meetings in order to avoid pressure and influence by the media and others. At the same time, the media had received special training in order to stimulate their interest in the project and the topics to be debated. This proved very successful in promoting the visibility in national media.

Another impact of this nation-wide initiative was a clear increase in public awareness on the topics that were the subject of debate.

The impact of the consultation on the revision of the Law on Bioethics is yet to be assessed, as the law has not yet been passed by Parliament. But it already seems that the public debate has contributed to the elaboration of the new draft law.

Despite a diversity of tools and a large plurality of views expressed it would be wrong to conclude that it provided a true representation of public opinion. The major part of regional discussions took place in a climate of tolerance and serenity, but this was not always the case. During debates on so-called "societal" issues, certain exchanges sometimes left little latitude for doubt, query or nuance, and thus for listening to other points of view.

Modes of online expression of opinion were also the subject to some criticism, such as: (i) the difficulty in accessing the website; (ii) the imprecision of formulation of the "findings and challenges"; (iii) the moderation, which some people considered insufficient; (iv) the definition of certain expressions that was not considered sufficiently acceptable to all parties.

Such encounters revealed that standpoints may vary with age and gender. Finally, hearings, that were numerous and diverse in nature, served not so much as fields of debate, but rather as a time for clarification and elucidation by the organisations who had accepted the invitation.

At this point, several findings should be emphasised:

• The significant role played by the younger generations in regional debates, varying with the themes under discussion, thanks to efforts on the part of regional forums (ERER),
• the difficulty of including the less informed and the more vulnerable members of the population in the consultations,
• the scant discussion on several major subjects during the consultation, for reasons which will need to be examined,
• the essential need for information that is of concern not only to citizens, but also to healthcare professionals,
• the importance of respect for differences and personal values, in particular as regards homosexual and intersex people.
• finally, the CCNE found that its operations were modified, but also enriched, by reflection during this process and the CCNE was also convinced that such participation henceforth would be necessary to consolidate sustainable national and regional debate on bioethical issues.