YouTube has emerged as a crucial source of healthcare information, reaching approximately 81% of adults in 2021. Around 35% of adults in the U.S. have utilized the internet to self-diagnose health conditions. Consequently, public health researchers are increasingly incorporating YouTube data into their studies. However, the lack of clear guidelines for best practices around research ethics using social media data, including YouTube, poses a significant challenge.
A recent systematic review aimed to elaborate the approaches to research ethics for public health studies utilizing YouTube data. The review encompassed articles from databases like PubMed, SocINDEX, Web of Science, and PsycINFO, adhering to PRISMA guidelines. Only those studies were considered that were published in peer-reviewed journals in English from January 1, 2006, to October 31, 2019, and included analyses on publicly accessible YouTube data on health or public health topics.
The review covered 119 articles from 88 journals and found that the most frequently studied health and public health topics were chronic diseases (37%), mental health and substance use (21.8%), and infectious diseases (16.8%). Interestingly, the majority of these articles (68.9%) did not mention any ethical considerations or stated that their study did not meet the definition of human participant research (13.4%).
Only a little over 12% of the studies sought institutional review board (IRB) review, and out of these, 80% were found not to meet the definition of human participant research and were thus exempted from IRB review. None of the IRB-approved studies contained identifying information about the users. Only one study sought informed consent from YouTube users, while 27.7% of the articles contained identifying information about content creators or video commenters.
The variation in practice suggests the urgent need for concrete guidelines on research ethics for social media research, particularly regarding anonymizing and seeking consent when using identifying information. Such guidelines would help maintain ethical standards while harnessing the potential of social media data in public health research.
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