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.

Highlights

  • This has led to a massive surge in social media analytics

  • It remains unlikely that a consensus on the ethical considerations on using social media research will ever be reached

  • Each Internet research project requires an individual assessment of its ethical issues and selection of the most appropriate methodological approach

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Summary

Introduction

Studies that conducted any qualitative methods to collect data on attitudes on the ethical implications of research using social media were included. 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 availability of social media opens up new avenues for researchers to collect data, especially from sources that may have previously been difficult to access This has led to a massive surge in social media analytics (whereby posts or chats are analyzed via qualitative methods or aggregate numerical data collection). Examples are pharmacovigilance (such as the discovery of adverse events), monitoring outbreaks of the flu epidemic, illicit drug usage or suicide patterns, and views on vaccinations and health service quality [3,4,5,6,7,8,9,10,11,12,13,14,15,16,17,18,19,20,21,22,23,24,25,26,27,28,29]

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