Please use this identifier to cite or link to this item: http://hdl.handle.net/2440/97554
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Type: Journal article
Title: The acceptability of conducting data linkage research without obtaining consent: lay people's views and justifications
Author: Xafis, V.
Citation: BMC Medical Ethics, 2015; 16(1):79-1-79-16
Publisher: BioMed Central
Issue Date: 2015
ISSN: 1472-6939
1472-6939
Statement of
Responsibility: 
Vicki Xafis
Abstract: A key ethical issue arising in data linkage research relates to consent requirements. Patients' consent preferences in the context of health research have been explored but their consent preferences regarding data linkage specifically have been under-explored. In addition, the views on data linkage are often those of patient groups. As a result, little is known about lay people's views and their preferences about consent requirements in the context of data linkage. This study explores lay people's views and justifications regarding the acceptability of conducting data linkage research without obtaining consent.A qualitative study explored lay people's views regarding consent requirements in data linkage via four hypothetical data linkage scenarios of increasing complexity. Prior to considering the scenarios, participants were provided with information regarding best practice data linkage processes via discussion and a diagrammatic representation of the process.Lay people were able to understand the intricate processes involved in data linkage and the key protections afforded within a short amount of time. They were supportive of data linkage research and, on the whole, believed it should be conducted without consent provided a data linkage organization de-identifies the data used so that researchers do not handle identifiable data. Many thought that de-identified data holds a different status to identifiable data and should be used without specific consent in research that aims to benefit society. In weighing up conflicting values and interests, participants shifted consent preferences before arriving at their final consent preference for each scenario and provided justifications for their choices. They considered the protection of people's information, societal benefits, and the nature and constraints of research and recognized that these need to be balanced.With some exposure to the features of data linkage, lay people have the capacity to understand the processes sufficiently in order to consider ethical issues associated with consent preferences. Shifts in views reveal the complexity of such decisions. While privacy protection remained an important consideration for most participants, adequate protection measures adopted in best practice data linkage were viewed by most as protection enough for data linkage to proceed without specific individual consent.
Keywords: Humans; Information Dissemination; Comprehension; Confidentiality; Qualitative Research; Research Design; Informed Consent; Information Storage and Retrieval; Adult; Research Personnel; Patient Satisfaction; Electronic Health Records
Rights: © 2015 Xafis. Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http:// creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
RMID: 0030039577
DOI: 10.1186/s12910-015-0070-4
Grant ID: http://purl.org/au-research/grants/arc/LP0882394
Appears in Collections:Medicine publications

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