Does Public Engagement Have a Role in Biomedical Clinical Research?

In this paper, we focus narrowly on the question of the relevance of public engagement in clinical research (PER). Over the past 20 years, demands for public engagement in research have grown dramatically in their number and scope. In the same period, we have also witnessed escalating attacks on expertise in general and science in particular. This paper responds to these developments. We draw on themes in John Rawls's Political Liberalism to make two distinct points which intertwine in the current anti-science, anti-expertise movement and shed light on the pro-PER phenomenon. First, we emphasize the importance of Rawls's awareness of the fragility of liberal democracy and, relatedly, the necessity of observing "the duty of civility," thus providing a basis for critiquing the tenor of PER advocacy. Second, we draw on Rawlsian insights on justice to explain why PER is not an issue of justice. We also employ findings from studies on human psychology to illuminate the significant difference between expert thinking and lay thinking. Noting the absence of evidence for PER producing benefits, and drawing on our own experience, we make the case that PER has no role in clinical research. It undermines accountability, diverts resources, and complicates the already burdensome research processes.