Accepted for/Published in: Journal of Medical Internet Research
Date Submitted: Aug 2, 2023
Date Accepted: Apr 16, 2024
Reporting of Ethical Consideration in Qualitative Research on the Internet Community: Scoping Review
ABSTRACT
Background:
The internet community has become a significant source for researchers to conduct qualitative studies analyzing users’ views, attitudes, and experiences about public health. However, few studies have assessed the ethical issues of qualitative research using social media data.
Objective:
This study aims to identify the reportage of ethical considerations in qualitative research of health care utilizing social media data.
Objective:
This study aims to identify the reportage of ethical considerations in qualitative research of health care utilizing social media data.
Methods:
This is a scoping review. All research about mining text from internet community published in peer-reviewed journals from inception to May 31, 2023 were retrieved to evaluate the rates of reporting ethical approval, informed consent, and privacy issues.
Results:
A total of 108 studies about mining text in the internet community were included. Out of these, only 59.3% (64/108) of studies sought ethical approval, and 45.4% (49/108) of those mentioned informed consent, but only 13% (14/108) of studies explicitly obtained informed consent. The majority (11/14, 78%) obtained digital informed consent from participants or administrators, and three (3/14, 21.4%) studies did not describe the method used to obtain informed consent. Notably, 76 of 108 (69.4%) studies contained users’ written content or posts, 68% (52/76) of studies contained verbatim quotes, and 32% (24/76) of studies paraphrased the quotes to prevent traceability. However, 16% (4/24) of studies did not report paraphrasing methods. Moreover, 18.5% (20/108) of studies used aggregated data analysis to protect users’ privacy. Furthermore, the rates of reporting ethical approval were different between different countries (P=.02) and whether contained written content (P<.001).
Conclusions:
The reporting of ethical considerations in qualitative research on social media is widely neglected. A national consensus of ethical considerations such as ethical approval, informed consent, and privacy issues are needed for qualitative research in internet community.
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