K Sénécal, M Stanton-Jean, D Avard
The participation of the public in the elaboration of politics has become unavoidable in most countries. The Universal Declaration on Bioethics and Human Rights of UNESCO, adopted by the General conference in 2005, makes the public a paramount aspect in the decision making in bioethics. In the case of explanatory research, based on political analysis and guidelines on the newborn screening programs from different countries, we have examined how the "public" is defined (who is the public?), what are the levels of privileged engagement, and what are the objectives sought out by this public participation? In general terms, we have noticed that the terms "consultation", "engagement", "participation" and "partnership" are often used as though they were synonymous, that the "public" is rarely well defined and that the levels of engagement from the public are variable...
December 2013: International Journal of Bioethics