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Rights statement: © Laurie, G., & Sethi, N. (2013). Towards Principles-Based Approaches to Governance of Health-Related Research Using Personal Data. European Journal of Risk Regulation, 2013(1), 43-57
Accepted author manuscript, 174 KB, PDF-document
|Article number||PMID: 24416087|
|Journal||European Journal of Risk Regulation|
|State||Published - 2013|
Technological advances in the quality, availability and linkage potential of health data for research make the need to develop robust and effective information governance mechanisms more pressing than ever before; they also lead us to question the utility of governance devices used hitherto such as consent and anonymisation. This article assesses and advocates a principles-based approach, contrasting this with traditional rule-based approaches, and proposes a model of principled proportionate governance. It is suggested that the approach not only serves as the basis for good governance in contemporary data linkage but also that it provides a platform to assess legal reforms such as the draft Data Protection Regulation.
- information governance, Health research, data linkage, principles based regulation