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

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 fi...

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Autores principales: Facca, Danica, Smith, Maxwell J., Shelley, Jacob, Lizotte, Daniel, Donelle, Lorie
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Public Library of Science 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7451523/
https://www.ncbi.nlm.nih.gov/pubmed/32853218
http://dx.doi.org/10.1371/journal.pone.0237875
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author Facca, Danica
Smith, Maxwell J.
Shelley, Jacob
Lizotte, Daniel
Donelle, Lorie
author_facet Facca, Danica
Smith, Maxwell J.
Shelley, Jacob
Lizotte, Daniel
Donelle, Lorie
author_sort Facca, Danica
collection PubMed
description 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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spelling pubmed-74515232020-09-02 Exploring the ethical issues in research using digital data collection strategies with minors: A scoping review Facca, Danica Smith, Maxwell J. Shelley, Jacob Lizotte, Daniel Donelle, Lorie PLoS One Research Article 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. Public Library of Science 2020-08-27 /pmc/articles/PMC7451523/ /pubmed/32853218 http://dx.doi.org/10.1371/journal.pone.0237875 Text en © 2020 Facca et al http://creativecommons.org/licenses/by/4.0/ This is an open access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0/) , which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
spellingShingle Research Article
Facca, Danica
Smith, Maxwell J.
Shelley, Jacob
Lizotte, Daniel
Donelle, Lorie
Exploring the ethical issues in research using digital data collection strategies with minors: A scoping review
title Exploring the ethical issues in research using digital data collection strategies with minors: A scoping review
title_full Exploring the ethical issues in research using digital data collection strategies with minors: A scoping review
title_fullStr Exploring the ethical issues in research using digital data collection strategies with minors: A scoping review
title_full_unstemmed Exploring the ethical issues in research using digital data collection strategies with minors: A scoping review
title_short Exploring the ethical issues in research using digital data collection strategies with minors: A scoping review
title_sort exploring the ethical issues in research using digital data collection strategies with minors: a scoping review
topic Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7451523/
https://www.ncbi.nlm.nih.gov/pubmed/32853218
http://dx.doi.org/10.1371/journal.pone.0237875
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