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UBC Theses and Dissertations

Does "misinformation" matter? Exploring the roles of technical and conceptual inaccuracies in a deliberative public engagement on biobanks Wilcox, Elizabeth Sarah


Science is increasingly affecting populations across the globe, and individuals and communities are growing more and more aware of the possible benefits and harms created by new technologies and changes in related policies. Prompted by inadequacies in representation, legitimacy, and trust, there is a need to increase public involvement in decisions regarding the development and implementation of science and technology. Due to claims that the public lacks the necessary knowledge to participate in these democratic processes, this thesis explores whether or not the presence of misinformation during deliberation undermines the usefulness of engaging publics for policy advice. The BC Biobank Deliberation brought together twenty-one individuals from across the province to explore the values and interests that ought to guide the governance of biobanks (repositories of annotated human biological materials often used as resources for research), and to test and evaluate a model for involving diverse publics in policy-making. As information related to biobanks is challenging to capture and disseminate, technical inaccuracies – those resulting from factual scientific or social information related to biobanking – and conceptual inaccuracies – those resulting from information considered to be outside the scope of biobanking, such as linking activities which are not facilitated by the existence of biobanks, to biobanks (e.g. cloning) – arose during deliberations. The analysis of this misinformation in the BC Biobank Deliberation seems to indicate that technical and conceptual inaccuracies play four main roles in deliberation: 1) no effect; 2) stall; 3) distraction; and 4) development. In general, when an overview of the scientific and social information related to the topic is provided during an engagement activity, participants who had little or no knowledge of the subject prior to being informed were able to deliberate on a variety of issues related to biobank governance. Findings indicate that in certain instances misinformation may help to develop deliberation, moving participants towards decision points related to biobank governance. This helps to show that scientific knowledge is not necessarily a prerequisite to participating in decision-making processes.

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