Building on Principles: The Case for Comprehensive, Proportionate Governance of Data Access
The amount of data in the world is growing rapidly. Researchers and others see the value of these data to answer compelling questions, and sometimes this involves linking different data sets together. Good and long standing processes for governing access to data exist, but these will be challenged with the amount and breadth of data researchers wish to use. In particular, it is increasingly clear that in this new world of data, data access governance cannot continue to rely on traditional approaches of de identification, anonymization and individual consent. An alternative to these risk minimization approaches is proportionate governance, a process that assesses potential risks and mitigations to those risks, including the potential public interest that is served by enabling research. We propose a flexible and adaptable proportionate governance framework that builds on existing models. Local adoption of this framework will require engagement with stakeholder to create consensus around principles, and implies broad commitment to the notion of a more open research culture.
Medical Data Privacy Handbook