Informing Citizen Engagement Activities about Human Genomics in Europe

Abstract

This article aims at informing forthcoming citizen engagement initiatives about human genomics and gene editing in particular in Europe. In order to initiate such a debate, it is necessary to uncover what has been guiding public discourse and in particular public debate about human genomics and gene editing. Moreover, it is also necessary to understand the grounds upon which human genomics is being currently governed. The authors present an assessment of citizen engagement on debates about human genomics, identifying common problematics found in different studies. The lack of citizen engagement activities about human genomics thus far suggest that there is a need to create opportunities for debate about this technology and its potential applications. This will constitute a necessary next step on the research about social and ethical implications of human genomics. In light of this, the authors set forth seven thematic narratives enshrined in policy and media discourses, as well as human genomics practices. These narratives come from different actors and are telling about on-going promises, assumptions, claims, interests, expectations and concerns across the human genomics field. The narratives can function, firstly, as a means to introduce or trigger the conversation in the desired topics through the exploration of the plausibility and desirability of such narratives from the point of view of the relevant actors, and secondly, to gather insights of the imaginaries and expectations of citizens related to the discourses on human gene editing.