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.