Navigating the Ethics of a Crisis.

Abstract

Navigating the Ethics of a Crisis Jennifer Randles I vividly recall Friday, March 13th, 2020. It was an unseasonably warm, sunny day in Central California, and though I did not know it at the time, my last working day on campus for the foreseeable future. I attended several meetings that day related to my various roles—study principal investigator, faculty, Sociology Department Chair, and Chair of our University IRB, the Committee for the Protection of Human Subjects. Just two days earlier, I held my final in-person class meetings [End Page 70] with my students as we discussed the University's announcement that we would transition to fully virtual teaching and learning the following Monday. We knew very little about COVID-19 in mid-March 2020, but experts were already predicting the vast human toll of the pandemic and related economic recession. I wept as my students and I discussed the suffering that would likely ensue, not just for those physically affected by the virus, but also for those who would lose their jobs, access to basic needs, and life-sustaining connections to others. In the last few work hours of that Friday afternoon before I unknowingly picked up my four-year-old daughter from daycare for the final time, I perused the Centers for Disease Control and Prevention website for guidelines about the use of personal protective equipment, physical distancing, and heightened COVID-19 risks to older and immunocompromised groups. There was no way I could have envisioned this turn merely seven months earlier when I started my first term as University IRB chair. For almost 20 years prior, I had conducted ethnographic research on families in poverty and taught qualitative research methods courses. These courses always included a detailed section on research ethics and an historical overview of egregious ethical violations like those in the Tuskegee Syphilis study in which human subjects were treated much more as subject and much less as human. This was a crucial foundation, but it did not fully prepare me to enter the world of IRB administration. COVID-19 hit just as I was starting to get a handle on the details of my university's IRB policies and procedures and figuring out how best to explain risk designations and review categories to faculty PIs and oversee numerous departmental and unit IRBs. After attending several IRB bootcamps, trainings, and webinars the previous semester, I quickly learned that the IRB admin world was more complex than I had ever imagined, requiring nuanced and professionalized knowledge, not only about research, but federal regulations and creating a culture of compliance. My entrée point into this world, one I would come to see as a unique institutional realm with its own customs, norms, and language, was one of sociologist and researcher, not IRB administrative professional. I was fortunate to have had wholly positive experiences as a student collaborator and faculty principal investigator with various IRBs, and I regarded their work as crucial in facilitating ethical research. I quickly learned just how many faculty experienced IRBs as a dreaded but necessary institutional hoop through which to jump, a potential obstruction to conducting research on which their professional reputation, tenure and promotion, and students' progress through degree programs depended. With one foot still deeply embedded in that world, I knew faculty were now facing unprecedented challenges of suspending in-person research and transitioning to virtual teaching, all while facing shelter-in-place restrictions that prompted daycare and school closures and the end of social life as we previously knew it. Our prior understandings of risk and vulnerability were being shaken to the core. There was an expected uptick in modification requests from PIs who quickly pivoted their research to virtual data collection and those who devised new research projects to study the various and far-reaching impacts of COVID-19. Not only did the pandemic necessitate research redesign, it also required researchers to reassess the unique physical, psychological, emotional, social, and identity risks to human subjects. Researchers have since found themselves in a dilemma: these risks were and still are largely unknown, but we need well-designed, ethical research to identify and understand them. We are quickly...