The integration of citizens into a science/policy network in genetics: governance arrangements and asymmetry in expertise

Abstract

Objectives While there are increasing calls for public input into health research and policy, the actual obtaining of such input faces many challenges in practice. This article examines how a Canadian science ⁄ policy network in the field of genetics integrated citizens into its structure and then managed their participation.Methods Our ethnographic case study covers a 5-year period and combines four data sources: observations of the networkÕs meetings and informal activities, debriefing sessions with the networkÕs leaders, semi-structured interviews with network members (n = 20) and document analysis.Results When setting up the network, the leaders wanted to include a range of perspectives (research, clinical and policy) to increase the relevance of their research production and knowledge-transfer activities. After 2 years of operation, the networkÕs members agreed to also include citizens who were not knowledgeable in genetics and policy issues. As neither the structure nor the dynamics of the network were modified, the citizens very soon started to feel uncomfortable with their role. They doubted the relevance of their contribution, pointing to an asymmetry in knowledge between them and the expert members. There were significant tensions in the networkÕs governance and the citizensÕ concerns during the process were not fully addressed. ConclusionThe integration of citizens into transdisciplinary networks requires recognizing and addressing the asymmetry of expertise that underpins such a collaborative endeavour. It also requires understanding that citizens may feel uncomfortable adopting the pre-defined role ascribed to them, may need a space of their own or may even withdraw if they feel being used.

Bringing personalized medicine to the community through public engagement

“…In such cases, members of the pub lic can become disengaged if they feel their participation is not relevant or tokenistic [25]. It is important to be upfront with participants of public engagement exercises about what they are expected to contribute and how it might be used by policy and decisionmakers (if at all).…”

“…Case studies such as these are especially informative; they reveal not only the pragmatic and policy out comes of engagement efforts (e.g., influencing the choice of biobank consent processes), but also the challenges of community engagement (e.g., engaging with the public on a topic about which many claim they are uninformed or find ing a diverse range of stakeholders for advisory groups and panels). Similarly, an ethnographic case study of a Canadian science/policy network in the field of genetics revealed how difficult obtaining and sustaining public input could be in this context [25]. Citizen representatives were invited to join the network 2 years after it was established, with neither the dynamics nor www.futuremedicine.com and knowledge production to be more 'democratic'; to contribute to a better understanding of citizen involvement in transdisciplinary networks Partial citizen involvement in the network; lessons learned by highlighting the challenges arising from citizen inclusion in a pre-established science/policy network [25] Etchegary et al…”

“…Similarly, an ethnographic case study of a Canadian science/policy network in the field of genetics revealed how difficult obtaining and sustaining public input could be in this context [25]. Citizen representatives were invited to join the network 2 years after it was established, with neither the dynamics nor www.futuremedicine.com and knowledge production to be more 'democratic'; to contribute to a better understanding of citizen involvement in transdisciplinary networks Partial citizen involvement in the network; lessons learned by highlighting the challenges arising from citizen inclusion in a pre-established science/policy network [25] Etchegary et al…”

“…Public engagement work also suggests the need for careful consideration of both the goals of an engagement initiative, as well as the role of the citizen(s) to be engaged, particularly if engagement will be over an extended period of time (e.g., participation on a committee) [24,25,44,101]. In such cases, members of the pub lic can become disengaged if they feel their participation is not relevant or tokenistic [25].…”

“…Indeed, encouraging public participation in policy decisions is not new; how ever, recent years have seen a growing empha sis in both academic and policy circles on the necessity and importance of public involvement [25], particularly in health contexts [26]. Public input into policy decisions is increasingly being promoted as "decision makers and other stake holders recognize the need to generate a wider range of policy options, increase the legitimacy of public policies and, more generally, improve the public's understanding of science" [25].…”