Many public health researchers use YouTube data in their research, but guidance for best ethical practices remains unclear. “This should be considered and discussed among both researchers and institutional ethics committees and IRBs,” says Diana Romero, PhD, MA, a professor in the Department of Community Health and Social Sciences at CUNY Graduate School of Public Health and Health Policy.
IRBs may have general statements about research involving publicly available data from large data sources, such as social media outlets. However, institutions are lacking explicit guidelines, reports Romero.
Romero and colleagues reviewed 119 articles from 88 journals that were published 2006-2019 and included analyses on publicly available YouTube data.1 The authors’ previous papers on how research ethics principles are applied to social media data focused on X (formerly Twitter) and Facebook.2,3 Some key findings from the YouTube study:
- Most of the studies did not mention ethical considerations at all.
- Many authors considered YouTube posts (and likes and comments) to be publicly available data not requiring ethical research review.
- Of the 119 articles, 27.7% contained identifying information about YouTube posts, even when these were posted by private individuals and not professional organizations or commercial entities.
- Only one of the studies attempted to anonymize direct quotes by not including user information to protect the individual’s identity. Most of the studies stated that researchers did not seek IRB review because the study did not meet the definition of human participant research as defined by their institution.
- Only 12.6% of the studies sought IRB review. Of those studies, 80% were determined by the IRB to be exempt from review because of not meeting the definition of human participant research, and 20% received IRB approval. “There may be some variability across institutions in terms of interpretation,” notes Romero.
- Of the three IRB-approved studies, none contained identifying information about content creators or video commentors. The ethics committee explicitly told the researchers of one of the IRB-approved studies not to include such identifying information.
- The investigators for one of the IRB-approved studies sought to obtain informed consent from YouTube users.
Researchers should consider that people post videos on social media, such as YouTube, often without the consent of some of the individuals being videotaped, cautions Heidi E. Jones, PhD, another study author and director of the Doctoral Program in Epidemiology and associate professor in the Department of Epidemiology & Biostatistics at the City University of New York’s School of Public Health. Research ethics committees and IRBs should consider putting guidelines in place that recommend anonymizing shared content of private individuals on social media in research publications, given that their consent status often is unknown, recommend the authors. “In general, clearer guidelines are needed for research ethics when social media data are being used, as the line between public and private is quite blurry to many social media users,” concludes Jones.
- Tanner JP, Takats C, Lathan HS, et al. Approaches to research ethics in health research on YouTube: Systematic review. J Med Internet Res 2023;25:e43060.
- Takats C, Kwan A, Wormer R, et al. Ethical and methodological considerations of Twitter data for public health research: Systematic review. J Med Internet Res 2022;24:e40380.
- Lathan HS, Kwan A, Takats C, et al. Ethical considerations and methodological uses of Facebook data in public health research: A systematic review. Soc Sci Med 2023; 322:115807.
