Abstract
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.
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Notes
- 1.
- 2.
We refer to the BC Linked Health Dataset, the precursor to Population Data BC, because it was in this original form that there was an operating proportionate governance model. Population Data BC does not currently operate with such a model.
- 3.
The BCLHD transitioned to Population Data BC in 2009. Population Data BC aims to build on BCLHD’s past success and is engaged in efforts to greatly expand its existing data holdings to include educational, occupational, environmental and socioeconomic information. Over time, Population Data BC aims to become the world’s most comprehensive data resource on factors that influence human health, well being and development (https://www.popdata.bc.ca/).
- 4.
SHIP recently joined the Farr Institute @ Scotland with the intent to expand the expertise, infrastructure and cross-sectoral collaboration for data linkage developed by SHIP (http://www.farrinstitute.org/centre/Scotland/3_About.html).
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We are grateful to Dawn Mooney for the figures in this chapter, to Megan Engelhardt for help with formatting, and to two anonymous reviewers whose comments greatly improved the content and presentation of the material.
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McGrail, K.M., Gutteridge, K., Meagher, N.L. (2015). Building on Principles: The Case for Comprehensive, Proportionate Governance of Data Access. In: Gkoulalas-Divanis, A., Loukides, G. (eds) Medical Data Privacy Handbook. Springer, Cham. https://doi.org/10.1007/978-3-319-23633-9_28
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