Behind the Computer Screen: What IRB and Ethics Professionals Really Think about Social Media Research

Introduction: Researchers are increasingly incorporating social media into their studies, including participant recruitment, content analysis and intervention delivery, yet there are no federal guidelines specific to the use of social media (SoMe) in research. Institutional Review Board (IRB) reviewers are called to review this SoMe research without federal guidance or training which could translate into crucial information overlooked or misinterpreted during ethical reviews. They are often left to interpret federal regulations that address privacy, confidentiality, and risk in relation to SoMe. The purpose of this study is to better understand what IRB members and ethics professionals think and do related to research using SoMe. Additionally, this study identifies what changes should be made at the federal or institutional level.

Methods: This study is a qualitative, interview study. Subjects were chosen using purposeful sampling to identify IRB members and ethics professionals with at least six months of cumulative experience reviewing the ethical conduct of research. Thirty-five IRB or ethics reviewers are being recruited through a combination of IRB website reviews, LinkedIn and Google searches, discussion board posts and snowball sampling. All interviews were conducted by a graduate student with qualitative interview experience and were recorded over the phone or in-person with later transcription. Open-ended questions gathered information about subjects’ personal use, attitudes and beliefs in regards to SoMe research and what, if any, changes were needed at the national or organizational level to better support IRB professionals on the review of SoMe research. SoMe research was defined as recruiting or locating participants but also the delivery of interventions or analysis of content using SoMe.

Results: Currently, twenty-seven interviews are complete. Preliminary categories include: 1) need for organizational changes with specific suggestions for training and policies, 2) personal attitudes and comfort level using SoMe, 3) specific ethical concerns about SoMe research:

1) “…it would be critical to have somebody on the review committee that has an understanding and a familiarity … with doing this kind of research.”

2) “… a lot of my facts are uninformed at this point.”

3) “Do we have a private space? It seems like more and more that space is eroding.”

Conclusions: This qualitative study explores a topic on which much remains unknown. Findings may influence future policies, training, staffing and procedures by IRBs and research institutions as they face a digital era of science with a growing demand to review research involving SoMe.