Curating Stories, Caring for Selves: Bioethical Dimensions of Narrative Stewardship

Abstract

Social practices of storytelling help shape who we are. The recognition and uptake we grant others’ stories shapes our understandings of ourselves and our responsibilities to those around us. In this way, I take personal identity formation as a social, or relational, practice. Understanding the ways we make sense of these stories and the ways our stories are told is critical to the ways we care for others. The co-creation and uptake of these identity-stories, then, critically shapes our agency and how we are able to be in the world. This dissertation is a compendium of three papers that explore the ways these social story sharing and building practices affect our ability to empower and care for one another. First, I explore how relational approaches to identity illuminate the roles loved ones can play in medical decisionmaking for patients with amyotrophic lateral sclerosis. Second, I consider how current data-sharing norms surrounding de-identification may be ill-fit for sharing participant narratives within qualitative research. Finally, I explore how, given varying epistemic resources, we might approach continuing to animate the stories of loved ones who have passed away, in order to integrate them into our own, and to hold their identities even after they have died. Taken together, these papers consider the bioethical dimensions of narrative identity-building practices and the ways the social webs and systems around us shape how we live out those stories. Through considering these narrative construction practices, this project centers how we can better provide stewardship over the narratives of others, and care for each other and ourselves in the process.