BEHIND THE COMPUTER SCREEN: WHAT IRB PROFESSIONALS REALLY THINK ABOUT SOCIAL MEDIA RESEARCH

Thesis (Master's)--University of Washington, 2016-06Introduction: Researchers are increasingly incorporating social media into studies. Thus, Institutional Review Board (IRB) reviewers are called to review this social media (SoMe) research, often without formal training or clear expectations of what practices in SoMe environments present increased risks for research participants. The purpose of this study is to explore the views and experiences of IRB and ethics professionals’ with SoMe research. Methods: For this qualitative interview study we used purposeful sampling to identify IRB members and ethics professionals with at least six months of cumulative experience reviewing the ethical conduct of research. All interviews were conducted by a trained graduate student and recorded with verbatim transcription. Open-ended questions gathered information about subjects’ personal use, attitudes and beliefs in regards to SoMe research. A combination of inductive and deductive qualitative analyses was conducted to identify themes and categorical variables. Data (30%) was double coded to ensure accuracy. Results: IRB/ethics reviewers were recruited from academia (65%), private (17%), government (15%), and medical (2%) organizations. Key responses included a lack of consensus about whether or not SoMe presented new privacy risks, demonstrated in two example quotes: “I mean if it's public and you haven't put it behind certain privacy settings then it's not confidential at all.” versus “Just because you posted something …(that) has been bought by another company and has made all those things public…the researcher has to really think about the true original intent.”. Three major themes arose from the data: 1) assumptions about potential ethical risks when using SoMe in research studies; 2) responsibility of keeping SoMe users informed of these risks; and 3) framing of privacy risks within the context of SoMe settings Conclusions: Findings may influence future policies, training, staffing and procedures by IRBs and research institutions as they face a digital era of science with evolving ideas about what SoMe ethics are and how best to uphold them