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Building on Principles: The Case for Comprehensive, Proportionate Governance of Data Access

  • Kimberlyn M. McGrailEmail author
  • Kaitlyn Gutteridge
  • Nancy L. Meagher

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.

Keywords

Personal Information Data Access Safe Haven Governance Framework Scientific Merit 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.

Notes

Acknowledgements

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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Copyright information

© Springer International Publishing Switzerland 2015

Authors and Affiliations

  • Kimberlyn M. McGrail
    • 1
    • 2
    Email author
  • Kaitlyn Gutteridge
    • 2
  • Nancy L. Meagher
    • 2
  1. 1.Centre for Health Services and Policy Research, School of Population and Public HealthUniversity of British ColumbiaVancouverCanada
  2. 2.Population Data BCUniversity of British ColumbiaVancouverCanada

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