Assessing Deliberative Design of Public Input on British Columbia Biobanks

Abstract

This chapter critically assesses the public deliberative methodologies used in British Columbia, which involved deliberative events spanning two weekends with 20–25 citizen-deliberators. The development of public and private genetic databases (biobanks) strains dominant understandings of health information privacy, consent to research participation, and responsibilities of the state for public health. This chapter presents an example of incorporating citizens’ views into the regulatory and institutional design of biobanks.