The Ethics of Drawing Illness: Interdisciplinary Negotiations in a Participatory Graphic Narrative Project

This paper illustrates how the design of health-related comics contributes to reflecting on the methodological and ethical challenges of qualitative research. In line with Comics-Based Research (CBR), we demonstrate how creating a comic on medical topics emerges from continuous and iterative dialogue among multiple voices: patients, sociologists, artists, and physicians. On an ethical and methodological level, our study explores the creation of a comic book about pancreatic diseases with varying stages of severity and possibilities for cure and recovery. Constructing a comic in such contexts provides a new way of visualizing and understanding the illness experience. Representing traumatic memory in comics can profoundly affect readers and those whose memories are depicted, while also helping researchers to amplify the voices of individuals whose experiences have been marginalized or misunderstood. Our goal was to create a product that was both a graphic memoir based on true stories and a scientific and informative resource. However, the graphic novel was not merely a tool for disseminating research; it was the central focus of our project, with all aspects designed around this medium. This included the development of interview protocols and the selection of participants, ensuring that the process remained aligned with the principles of participatory and co-constructed storytelling.