Grant: Project Grant

Canada has a long history of innovative and privacy-sensitive use of data for research. Current policies, however, have been criticized for being slow and complicated, and more importantly have not kept up with changes in data, technology, researcher desires, and public expectations. One important development is the use of tissues, blood and other specimens taken from individuals, including children, and in particular the linkage of that information to other existing data.¿The public has had little role in creating the rules around use of these linked data and specimens for research. This is an important missing piece, because privacy legislation enables research that is for the public good, but nowhere is "public good" defined. Perhaps the public's negative reaction to announcements about new uses of data in the UK should then not be such a surprise; what is legally allowed is not always acceptable to the public. The goal of this program of research is to engage citizens deliberatively, give them information about data access, use of specimens in research and protection of privacy, and ask them to discuss the issues that matter to them and provide advice. The research questions we will address include: What policy advice about access to data and specimens does the public provide? What rules of access do they recommend? Do deliberative participants question or change their decisions over time? And can an ongoing group of citizens have meaningful influence on operations of a data access system? Our team includes people with expertise in research, ethics, public deliberation, social psychology, policy development and use of specimens for research. Our findings will be applied in BC and relevant to other places as well.