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

Overview

Journal Eur J Risk Regul

Date 2014 Jan 14

PMID 24416087

Citations 16

Authors

Graeme Laurie

Nayha Sethi

Affiliations

Soon will be listed here.

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 . 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.

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