Quigley, Etain and Holme, Ingrid and Doyle, David M. and Ho, Aileen K. and Ambrose, Eamonn and Kirkwood, Katie and Doyle, Gerardine (2021) “Data is the new oil”: citizen science and informed consent in an era of researchers handling of an economically valuable resource. Life Sciences, Society and Policy, 17 (1). ISSN 2195-7819

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Abstract

As with other areas of the social world, academic research in the contemporary healthcare setting has undergone adaptation and change. For example, research methods are increasingly incorporating citizen participation in the research process, and there has been an increase in collaborative research that brings academic and industry partners together. There have been numerous positive outcomes associated with both of these growing methodological and collaborative processes; nonetheless, both bring with them ethical considerations that require careful thought and attention. This paper addresses the ethical considerations that research teams must consider when using participatory methods and/or when working with industry and outlines a novel informed consent matrix designed to maintain the high ethical standard to which academic research in the healthcare arena has traditionally adhered.

Item Type:	Article
Additional Information:	Quigley, E., Holme, I., Doyle, D.M., Ho, A.K., Ambrose, E., Kirkwood, K. & Doyle, G. 2021, "“Data is the new oil”: citizen science and informed consent in an era of researchers handling of an economically valuable resource", Life sciences, society and policy, vol. 17, no. 1, pp. 9-9.
Keywords:	Huntington’s disease; Data; GDPR; Ethics; Citizen science;
Academic Unit:	Faculty of Social Sciences > Law
Item ID:	18088
Identification Number:	https://doi.org/10.1186/s40504-021-00118-6
Depositing User:	David Doyle
Date Deposited:	26 Jan 2024 14:57
Journal or Publication Title:	Life Sciences, Society and Policy
Publisher:	Springer Berlin Heidelberg
Refereed:	Yes
URI:	Publisher
Use Licence:	This item is available under a Creative Commons Attribution Non Commercial Share Alike Licence (CC BY-NC-SA). Details of this licence are available here

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