Knowing, relationships and trust-citizens' perceptions of whole genome sequencing for the Genetics Clinic of the Future.

Abstract

The objective of this article is to present various views from different groups of citizens on the topic of whole genome sequencing (WGS). Sixteen focus groups were carried out in Italy and Austria which aimed at reflecting on the question of how to ensure that the implementation of WGS into the clinic is relevant and responsive to the needs of all members of society. In the qualitative analysis of the focus groups, three key themes (knowing, relationships and trust) were investigated. Although the majority of the participants favoured a person-centred care approach, we also found more radical perspectives in the relationship theme. This includes a self-centred orientation in which health care institutions should be prepared to integrate self-interpretation efforts of citizens and develop strategies to deal with them. Different attitudes towards getting to know genetic information (knowing) and varied approaches to decision-making for or against the use of WGS were observed. Personal capacities, in particular those to handle medical information, were emphasized as key factors. This means that it is important not to connect the desire not to know with a rejection of the technology per se but rather to support information and consultancy processes that effectively involve citizens. Concerning the third theme, we have underlined the important role of mistrust in addition to trust because it mostly points to areas or conditions considered problematic. Thus, mistrust is also a way to articulate critique, for example, of the profit-making with patient data, that has to be taken seriously by governance.