Project Leaders:        
Peter Watson, Kieran O’Doherty

Lead Institution:        
University of British Columbia

Technology Applications:    
Governance, biobanking

Research Funding Program:    
SOF 1

The CAE/BC Biolibrary project aims to engage the public in deliberations over regulations and governance of blood and human tissue biobanking that is conducted through the framework of the new BC BioLibrary. The objective of these public deliberations is to support guideline, protocol and policy formation for the BioLibrary that are ethically sustainable and politically legitimate.

Biobanks are centralized collections of human blood, and tissue samples and other data, and are vital for health research. Biobanks serve the needs of researchers for access to high quality and diverse tissues associated with related health information. Biobanks are essential resources for scientists to refine our knowledge of disease, provide genetic markers for diagnostic tests and to understand why people respond differently to pharmaceuticals. However, the public interests in how such biobanks are used and in how Biobanks protect privacy can be perceived to be isolated from the current processes of biobanking. The Genome BC-funded project will bring together a diverse group of British Columbians to deliberate about the main public concerns over biobanking in the context of the development of governance procedures for these important data sets.

The face-to-face research team of the Centre for Applied Ethics (CAE), UBC will interview 25 randomly chosen individuals from diverse backgrounds to determine the major public concerns over biobanks and will encourage deliberations on how best to deal with these concerns. The project will use a CAE entre-designed model based on principles of deliberative democracy where participants will be given information booklets, access to experts and media reports to fully educate the participants that will discuss the issues. Encouraging public participation in policy discussions will fulfill the commitment of the BC BioLibrary to public transparency and accountability.

The ultimate goal of deliberative democracy is to reach a consensus amongst participants and the aim of BioLibrary will be to use the issues raised in discussions to generate appropriate guidelines governing biobanking in BC.