From engaging publics to engaging knowledges: Enacting "appropriateness" in the Austrian biobank infrastructure

Public Underst Sci. 2019 Apr;28(3):275-289. doi: 10.1177/0963662518806451. Epub 2018 Oct 16.

Abstract

While there is consensus on the essential importance of public engagement in further developments of biobanking, the related investigation of public views predominantly focused on the concerns expressed by the publics, and the concrete formats of public engagement, without delving into the ways these concerns are constituted. In this article, we summarize recent research on public engagement in order to describe the constitution of respective concerns as "engagement of knowledges." By shifting the focus of analysis from "publics" to "knowledges," we draw attention to the interaction dynamic through which citizens embed the new knowledge they receive during expert interactions into the stock of knowledge they already possess. Analyzing our recent investigation of public views on biobanking in the form of citizen-expert panels in the Austrian infrastructure of biobanks (BBMRI.at), we trace this dynamic through citizens' recurrent concerns that the research and consent practices related to biobanking should be "appropriate."

Keywords: appropriateness; biobanks; data; informed consent; public engagement; trust.

Publication types

  • Research Support, Non-U.S. Gov't