Abstract

This article draws on research undertaken by the authors as part of the Administrative Data Research Centre in England (ADRC-E). Between 2014 and 2017, we conducted four case studies on government administrative data for education, transport, energy and health. The purpose of the research was to examine stakeholder perspectives about the sharing, linking and re-use (secondary use) of government administrative data. In relation to the role and nature of consent given by data subjects for re-use, our study revealed significant variations in data provider and researcher attitudes. Although our study setting was England, we believe that the findings have wider resonance. Our analysis identified six factors which might account for the variations around consent: the specificities of the legislative framework governing the collection and processing of particular data; the type of data being collected and the relational context in which it is created; the broader information governance framework in which the data resides; the creating organization's approach to data release; the relative levels of risk aversity within the creating organization; and public perceptions and social attitudes. In conclusion, we consider whether consent is still the best mechanism available for data re-use, or whether a social contract model of data sharing should be developed.

Highlights

  • Obtaining the consent of the data subject is the primary mechanism which underpins the fair and lawful processing of personal data in a European setting

  • As one respondent commented: You know, some people think we should just put the National Pupil Database on the web so anyone who wants to use it. . . and obviously in a world of open policy-making and open data, there’s much to be said for that. (A16). This attitudinal shift in Department for Education (DfE) reflects changes to the regulations governing the sharing of individual pupil data, where a narrow definition of acceptable research was broadened to legitimise use of individual pupil data for the social and collective ‘purpose of promoting the education or well-being of children in England’ and ‘conducting research or analysis, producing statistics, or providing information, advice or guidance’ (UK Government, 2013)

  • Our analysis of the four case studies suggested that the role that consent plays in both enabling and restricting research use of routinely collected government administrative data varies between case study sectors and creating organisations

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Summary

Introduction

Obtaining the consent of the data subject is the primary mechanism which underpins the fair and lawful processing of personal data in a European setting. It acts as a governance mechanism ‘to protect individual interests, to promote personal autonomy, and to act as a foundation for trust’ (Laurie and Postan, 2013: 372–373). Does your research use administrative data from a single government source, or from two or more departments? Are there any conflicting requirements and how are these resolved in practice?

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