Biobanking in British Columbia: discussions of the future of personalized medicine through deliberative public engagement

Abstract

In this article, we examine the role of deliberative democracy theory and practice as a means to enhance policy approaches to ethical and social issues related to biobanks. Biobanks are seen as a vital component in the rapid trend towards personalized medicine, which, while alluring, also face key issues relating to genetic discrimination, privacy, informed consent and a concern regarding how to develop and maintain the trust of citizens. We describe the case of a deliberative public engagement in which a diverse group of citizens deliberated on the appropriate values that should guide biobanking in British Columbia, Canada. We argue that the use of such methods is a necessity if we are to meaningfully consider diverse 'public interests' during the development of biobanks and thereby personalized medicine.

Keywords: biobanks; deliberative democracy; personalized medicine; public engagement.