Grant: CIHR Fellowship

Many aspects of our daily lives depend on vast amounts of data getting into the right hands, but we lack the evidence needed to create policies that actually result in data getting in the right hands. For example, in hereditary cancer risk assessment, there is often not enough data available to accurately determine the risk of cancer related to specific gene variants. Many companies who produce data on cancer gene variants treat that data as their own property and therefore do not share it, but still benefit from also accessing public data despite not contributing any. This is one example of the struggles between private and open approaches for governing knowledge-based resources like genetic data, with little evidence to inform which approaches should be supported through policy. My research will produce the evidence needed to help us develop policies for governance that achieve the intended goals of data sharing and use. The communities of users (scientists, clinicians, counselors, and the people contributing genomic variants) are diverse but share a common interest in using the best possible information to make very high stakes decisions, and to formulate policies to produce and govern a robust resource. Using multiple data sources, I will examine the data sharing and use over time and work with experts to develop polices based on this evidence. This work will improve our understanding of how to build effective governance of knowledge-based resources, and will specifically guide policy-development to support the provision and use of cancer genomic variants and improve how we test for hereditary cancer.