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.
Highlights
Much has been written about the ethics of conducting research with minors, due in part to the distinctive ethical issues that emerge when conducting research with this population [1, 2]
The reviewed literature identified numerous ethical issues related to conducting digital data collection in research with minors which 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 social media, and gatekeeping
As indicated at the outset of this review, our intention was to explore existing literature to understand and anticipate the ethical issues associated with collecting digitally derived research data with minors in order to forward any possible resolutions based on the reviewed literature
Summary
Much has been written about the ethics of conducting research with minors, due in part to the distinctive ethical issues that emerge when conducting research with this population [1, 2]. The ethical dimensions, considerations, and challenges that are associated with digital data collection in research involving minors remains unclear. Does research that involves the generation and/or collection of digital data among minors present unique ethical challenges? This scoping review explores existing literature to understand and anticipate the ethical issues associated with collecting digitally derived research data with minors in addition to possible resolutions that can be put forward based on the reviewed literature. The first defines a minor as any child who has not reached the age of majority, generally thought to be under the age of 18. The problem with this definition is that the age of majority varies by jurisdiction. Two notable documents which have been extremely influential in research ethics to the extent that many countries base their regulations on their guidelines, the Declaration of Helsinki [5] and the International Ethical Guidelines for Health-related Research Involving Humans [6], discuss age of majority and minors’ participation in research
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