Accepted paper:

The missing publics: Taiwan Biobank, controversy, and democratic governance

Authors:

Yu-Yueh Tsai (Academia Sinica)
WanJu Lee (Academia Sinica)

Paper short abstract:

This paper aims to examine how Taiwan Biobank engaged with publics and dealt with the controversy. We argue that Taiwan Biobank lacked the "upstream public engagement" imaginary and the legalization of ethics and governance became the approach for settling controversy.

Paper long abstract:

With the concept of "scientific imaginaries of publics", this paper examines how Taiwan Biobank, the large-scale and population-based national biobank, engaged with publics and dealt with the controversy. First, this article argues that Taiwan Biobank's implementation of public communication was mainly aiming for scientific recruitment, which did not engage multiple publics to further reflect on different civic epistemologies against Taiwan Biobank. This reflected the imaginary of a singular deficit public that must be further educated and informed in order to be altruistically participated. Second, the public controversy reveals a picture of the "missing publics". The public controversy happened between scientists, some non-governmental organizations and social scientists. These actors spoke for the public, but their interventions were not based on general-public perspectives or intended to initiate genuine public engagement. Third, the Ethics and Governance Committee of Taiwan Biob ank is legally responsible for monitoring Taiwan Biobank on the public's behalf; however, its independence and social legitimacy have been questioned, causing further problems for its democratic governance. This article argues that Taiwan Biobank lacked the "upstream public engagement" imaginary to include multiple stakeholders to debate on the normative commitments of Taiwan Biobank. Actors with different values and public imaginaries resorted to the media, which did not resolve conflicts or enhance mutual understandings. The legalization of ethics and governance became the approach for settling controversy and seeking social consensus; this approach has subsequently shaped the specificity of scientific governance in Taiwan.

panel C26
Precision medicine at the crossroads: meeting the micro and macro, the molecular and social in new medical strategies