What interests and values should guide biobanking in British Columbia?
Existing governance frameworks were developed for small-scale research projects and are based upon personal autonomy and individual informed consent. Large-scale and networked collections of biological specimens and data pose new problems. These range from the expense and unwieldy nature of the consent process for researchers, to complaints about commercialization and unauthorized use of samples by indigenous groups, to fears of data linkage by privacy advocates, and debates about the relative value of ‘biobanks’ versus ‘cohorts’ to public health. Transparent public engagement with biobanking in BC is long overdue. A 2007 proposal to the Michael Smith Foundation for Health Research, to fund a BC-wide BioLibrary provides the ideal opportunity. This project draws from theories of deliberative democracy and the pioneering example of the Citizen’s Assembly in British Columbia, yet remains mindful of critiques lodged by ‘difference theorists’ and science and technology studies. Our aim: to
