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Lookup NU author(s): Dr Mhairi Aitken
This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0).
The digitization of society and academic research endeavours have led to an explosion of interest in the potential uses of population data in research. Alongside this, increasing attention is focussing on the conditions necessary for maintaining a social license for research practices. Previous research has pointed to the importance of demonstrating “public benefits” from research for maintaining public support, yet there has been very little consideration of what the term “public benefits” means or what public expectations of “public benefits” are. In order to address this pressing issue a series of deliberative workshops with members of the public were held across Scotland in May and June 2017. The workshops aimed to engage a cross-section of the Scottish population in in-depth discussions of the ways that the public – or publics – might benefit from data-intensive health research. The findings reported here discuss workshop participants’ understandings and expectations of health research; who they considered to be “the public” that should benefit from health research and; in what ways they felt “the public” should benefit. Workshop participants’ preference was clearly for the widest possible public benefit to be felt by all, but they also acknowledged the value in research aiming to primarily benefit vulnerable groups within society. A key focus of discussions was the extent to which workshop participants were confident that potential public benefits would be realised. A crucial consideration then is the extent to which mechanisms and political support are in place to realise and maximise the public benefits of data-intensive health research.
Author(s): Aitken M, Porteous C, Creamer E, Cunningham-Burley S
Publication type: Article
Publication status: Published
Journal: Big Data & Society
Year: 2018
Volume: 5
Issue: 2
Print publication date: 01/07/2018
Online publication date: 06/12/2018
Acceptance date: 01/11/2018
Date deposited: 27/01/2019
ISSN (electronic): 2053-9517
Publisher: Sage Publications, Inc.
URL: https://doi.org/10.1177/2053951718816724
DOI: 10.1177/2053951718816724
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