Casey Fiesler

Data Is People: Research Ethics Beyond Human Subjects

Summary:
Everyone’s tweets, blog posts, photos, reviews, and dating profiles are all potentially being used for science. Though much of this research stems from social science and purposefully engages with the human aspects of online content, in many cases this human-created content simply becomes “data.” In these kinds of contexts—from facial recognition research trained on dating profile photos to algorithms that can predict mental health conditions from your tweets—traditional ethical oversight such as university Institutional Review Boards often does not apply. But what is the line between “data” and human subjects research? In this talk, I draw from empirical work to argue that the current ethical metrics that many researchers use to determine whether it is okay to collect or use online content are all wrong, particularly when it comes to the “publicness” of data or whether collection is allowed by Terms of Service agreements. I discuss findings from studies of user perceptions of researchers’ use of tweets, analysis of social media TOS, interviews with members of vulnerable online communities, and a literature review of papers that use Reddit data, all to consider the broader landscape of research ethics beyond human subjects.

Casey Fiesler is an associate professor in Information Science (and Computer Science by courtesy) at University of Colorado Boulder. She researches and teaches in the areas of technology ethics, internet law and policy, and online communities. Her work on research ethics for data science, ethics education in computing, and broadening participation in computing is supported by the National Science Foundation, and she is the recipient of an NSF CAREER Award. Also a public scholar, she is a frequent commentator and speaker on topics of technology ethics and policy, and her research has been covered everywhere from The New York Times to Teen Vogue, but she's most proud of her TikToks. She holds a PhD in Human-Centered Computing from Georgia Tech and a JD from Vanderbilt Law School.