1. ESRC Genomics Network (archive)
  2. Gengage
  3. The Human Genre Project

Cesagen · Events

Deliberating Biobanks: From Institutional to Relational Trust

Seminar   07.10.2008






Associate Professor Beverley McNamara, School of Social and Cultural Studies, University of Western Australia


Centre for E-Science AccessGrid Suite, Faraday Building, Lancaster University

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Public engagement exercises are now considered a necessary component in many areas of health research and policy development. This trend has been demonstrated internationally in genetic research using biobanks, which are large scale repositories of genetic and health information developed to service future biomedical research. Involving the public as potential research participants is seen as crucial to the success of the research and its ultimate outcomes. However, surveys, forums and other strategies frequently used to facilitate public engagement in genetic research are not neutral tools of information gathering. The methodologies used and the manner in which the tools are constructed reflect assumptions about those who are to be engaged, including their levels of scientific literacy and propensity to act on information. By interrogating the manner in which the methods used in public engagement exercises are framed we are better able to discriminate between those exercises aimed at engineering consensus and legitimacy for planned projects, and those that are more likely to engender public trust and active contribution. This paper compares two examples of public engagement used in biobank research in Western Australia. Observation, content analysis of websites and relevant documents and interviews with participants were used to examine: (1) the manner in which the engagement exercises were conducted; and (2) the trust demonstrated by those participating in the engagement exercises.

Despite the framing of the engagement exercises, the methodologies used and the manner in which they are conducted, public trust is central to the engagement outcome. However, in one exercise the trust demonstrated is institutionalised and narrow while in the other it is built upon a relationship between the participants and the experts and researchers.The trust relationship is directly related to the exercise of citizenship and the potential to make a difference.

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