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      Exploring the ethical issues in research using digital data collection strategies with minors: A scoping review

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          Abstract

          While emerging digital health technologies offer researchers new avenues to collect real-time data, little is known about current ethical dimensions, considerations, and challenges that are associated with conducting digital data collection in research with minors. As such, this paper reports the findings of a scoping review which explored existing literature to canvass current ethical issues that arise when using digital data collection in research with minors. Scholarly literature was searched using electronic academic databases for articles that provided explicit ethical analysis or presented empirical research that directly addressed ethical issues related to digital data collection used in research with minors. After screening 1,156 titles and abstracts, and reviewing 73 full-text articles, 20 articles were included in this review. Themes which emerged across the reviewed literature included: consent, data handling, minors’ data rights, observing behaviors that may result in risk of harm to participants or others, private versus public conceptualizations of data generated through social media, and gatekeeping. Our findings indicate a degree of uncertainty which invariably exists with regards to the ethics of research that involves minors and digital technology. The reviewed literature suggests that this uncertainty can often lead to the preclusion of minors from otherwise important lines of research inquiry. While uncertainty warrants ethical consideration, increased ethical scrutiny and restricting the conduct of such research raises its own ethical challenges. We conclude by discussing and recommending the ethical merits of co-producing ethical practice between researchers and minors as a mechanism to proceed with such research while addressing concerns around uncertainty.

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                Author and article information

                Contributors
                Role: ConceptualizationRole: Data curationRole: Formal analysisRole: Writing – original draftRole: Writing – review & editing
                Role: ConceptualizationRole: Data curationRole: Formal analysisRole: Writing – original draftRole: Writing – review & editing
                Role: ConceptualizationRole: Data curationRole: Formal analysisRole: Writing – original draftRole: Writing – review & editing
                Role: ConceptualizationRole: Data curationRole: Formal analysisRole: Writing – original draftRole: Writing – review & editing
                Role: ConceptualizationRole: Data curationRole: Formal analysisRole: SupervisionRole: Writing – original draftRole: Writing – review & editing
                Role: Editor
                Journal
                PLoS One
                PLoS ONE
                plos
                plosone
                PLoS ONE
                Public Library of Science (San Francisco, CA USA )
                1932-6203
                27 August 2020
                2020
                : 15
                : 8
                : e0237875
                Affiliations
                [1 ] Faculty of Information and Media Studies, Western University, London, ON, Canada
                [2 ] School of Health Studies, Western University, London, ON, Canada
                [3 ] Department of Computer Science, Western University, London, ON, Canada
                [4 ] Arthur Labatt Family School of Nursing, Western University, London, ON, Canada
                Utrecht University Medical Center, NETHERLANDS
                Author notes

                Competing Interests: The authors have declared that no competing interests exist.

                [¤a]

                Current address: Faculty of Law, Western University, London, ON, Canada

                [¤b]

                Current address: Department of Epidemiology and Biostatistics, Western University, London, ON, Canada

                Author information
                http://orcid.org/0000-0002-3150-4805
                Article
                PONE-D-20-09390
                10.1371/journal.pone.0237875
                7451523
                32853218
                1f1f5ddc-6f36-4b48-9618-42b29075da7b
                © 2020 Facca et al

                This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

                History
                : 1 April 2020
                : 4 August 2020
                Page count
                Figures: 1, Tables: 2, Pages: 17
                Funding
                This work was supported by the Western University Faculty of Health Sciences Emerging Team grant.
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