The Ethical Implications of Collecting Data from Online Health Communities

Online communities can provide researchers with a raft of knowledge about a range of populations and groups. While ethical considerations in online research are complicated and nuanced, they are often underreported in existing research. Issues concerning the use of verbatim quotes from online communities, seeking consent, and protecting from harm and distinctions between private and public spaces in particular have generated much debate in recent years. We advocate for greater thought to be given to the ethical implications of online research and reflect on what should be considered public information, the protection of anonymity, and how to protect online users from harm. This case study provides an insight into the practicalities of conducting online research using examples from research conducted by four doctoral students