Sharing Health Stories in a World of Privacy Risk

Abstract

Abstract:This commentary examines a collection of narratives published in Narrative Inquiry in Bioethics by individuals who chose to “go public” with sensitive health experiences on social media. The authors’ stories offer rich qualitative insights into the benefits and harms of online self-disclosure. In the stories, three themes emerge. First, the desire to share is not opposed to privacy; rather, privacy makes meaningful sharing possible. Second, social media platforms’ promises of user control largely fail in practice, leaving people who share personal information online vulnerable to algorithmic amplification, contextual collapse, and unintended consequences. Third, social media platform design powerfully shapes behavior, often in ways that serve corporate interests, rather than users’ well-being. Drawing these narratives into conversation with privacy theory and empirical research, this commentary argues that current privacy protections are inadequate in an environment defined by limited choice and abundant risk. It concludes by suggesting that health-related social media use calls for stronger legal and design-based reforms, including duties that better protect vulnerable users.