[Promoting public involvement to increase the legitimacy in health policy decisions].

Abstract

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. However, in spite of these findings, it appears that this willingness to respect the choice of individuals and to implicate the population in the debates or in the elaboration of health policies is motivated by the pursuit of values. These last few, although not frequently explicitly named to justify the initiative to involve the public constitute the source of these initiatives. In summary, it is evident that the moral values result in a significant difference in the answers that a population will give to the issues raised in a given domain and that these are often values that participation of the public looks to better identify and to integrate into health policies.