Attitudes Toward the Ethics of Research Using Social Media: A Systematic Review

Abstract

BackgroundAlthough primarily used for social networking and often used for social support and dissemination, data on social media platforms are increasingly being used to facilitate research. However, the ethical challenges in conducting social media research remain of great concern. Although much debated in the literature, it is the views of the public that are most pertinent to inform future practice.ObjectiveThe aim of our study was to ascertain attitudes on the ethical considerations of using social media as a data source for research as expressed by social media users and researchers.MethodsA systematic review was conducted, wherein 16 databases and 2 Internet search engines were searched in addition to handsearching, reference checking, citation searching, and contacting authors and experts. Studies that conducted any qualitative methods to collect data on attitudes on the ethical implications of research using social media were included. Quality assessment was conducted using the quality of reporting tool (QuaRT) and findings analyzed using inductive thematic synthesis.ResultsIn total, 17 studies met the inclusion criteria. Attitudes varied from overly positive with people expressing the views about the essential nature of such research for the public good, to very concerned with views that social media research should not happen. Underlying reasons for this variation related to issues such as the purpose and quality of the research, the researcher affiliation, and the potential harms. The methods used to conduct the research were also important. Many respondents were positive about social media research while adding caveats such as the need for informed consent or use restricted to public platforms only.ConclusionsMany conflicting issues contribute to the complexity of good ethical practice in social media research. However, this should not deter researchers from conducting social media research. Each Internet research project requires an individual assessment of its own ethical issues. Guidelines on ethical conduct should be based on current evidence and standardized to avoid discrepancies between, and duplication across, different institutions, taking into consideration different jurisdictions.

Qualitative analysis of UK and USA open mental health Facebook groups for mental health support (Preprint)

“…Despite ethical considerations, which were considered at every level within this research, [90], the authors are in agreement with Golder, Amed, Norman and Booth's recently stated viewpoint that 'we cannot afford to miss the considerable potential of social media research and its unique contribution to knowledge' [91]. The aim of the current research is to gain an understanding of how people use open Facebook groups for their emotional and mental health needs, and to gain an insight into how they support each other through these groups.…”

Human-Computer Interaction, Ethics, and Biomedical Informatics

“…The majority of articles focused on ethical concerns at the intersection of social media and biomedical informatics published during the review period focus on the ethical conduct of research on and through these platforms [27][28][29][30][31][32][33], including consideration for particularly sensitive cases in mental health [34,35]. A few articles discuss the ethical issues associated with direct use of social media for health by patients and providers as they relate to HCI [36,37].…”

“Because... I was told... so much”: Linguistic Indicators of Mental Health Status on Twitter

“…Their analysis revealed that Twitter users are generally aware that Twitter data is public by default and were not opposed to the use of publicly available data for health monitoring activities provided that the data are anonymized and aggregated to remove personally identifiable information. Golder et al [16] examined the attitudes of both social media users and researchers on using social media as a data source for research and had similar responses. Importantly, previous studies have also shown that users unwittingly share private information on Twitter, suggesting they may not be aware of what can be inferred from their publicly available data.…”