Edinburgh Research Explorer

Towards Principles-Based Approaches to Governance of Health-Related Research Using Personal Data

Research output: Contribution to journalArticle

Related Edinburgh Organisations

Access status

Open

Documents

  • Download as Adobe PDF

    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

http://www.lexxion.de/de/verlagsprogramm-shop/details/3103/221/ejrr/ejrr-1/2013/towards-principles-based-approaches-to-governance-of-health-related-research-using-personal-data.html
Original languageEnglish
Article numberPMID: 24416087
Pages (from-to)43-57
JournalEuropean Journal of Risk Regulation
Volume2013
Issue number1
StatePublished - 2013

Abstract

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.

Research areas

  • information governance, Health research, data linkage, principles based regulation

Download statistics

No data available

ID: 6211048