France. Involving the Public in a Review of the Law on Bioethics

Key Contextual Factors

• Since 2011, the National Advisory Committee of Ethics (CCNE) is obliged by law to organize a public debate before each revision of the bioethical law. In the 2018-2019 revision of the law, the CCNE chose to collaborate with regional ethics committees to organize local discussions. They organized a central citizen forum and online discussion board. The goal was to include as many publics as possible.

Key Components/Steps

• Regional debates where experts explained to participants the main issues at stake.
• Interactive website where participants gave their opinions, reacted or voted for other’s opinions.
• Interviewing organizations on desired changes in the bioethical law.
• Meetings with institutional ethics committees and experts, to reflect on themes at stake.
• Creation of a citizen committee, informed by experts of different backgrounds, to debate on two main issues during four weekends: genomics and end-of-life.
• The use of social (Facebook, Twitter) and traditional media (newspaper, radio, television) to inform the public about this initiative.

Main Impacts / Added Value

• The bioethical law has been reviewed based on the public opinion and its values. It raised general awareness about how important it is to engage the public. Consequently, the CCNE wants the citizen committee to be a permanent structure that plays a role in the revision of the French bioethical law.

Lessons Learned

• Organizing an introduction to the mains themes for journalists to ensure they understand the topic enough to inform the population.
• If the initiative covers different topics related to each other, the central question should be broad enough to be used as a slogan for the general debate.
• Participants speak more freely when they feel personally concerned by the topic. Consequently, person-related approaches of the topic should be favored.

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