"Stories like ours continue": A phenomenological exploration of the lived experiences of ex-serial clinical trial volunteers in South India.

Purpose: Indian media has frequently highlighted the plight of vulnerable low-income groups who over-volunteer in clinical trials to make ends meet, often at the cost of their health. Despite these revelations, the lived experiences of these individuals remain insufficiently documented in academic literature. This study seeks to address this gap by exploring how clinical trial volunteers construct their world around their experiences of having taken part in multiple trials over a span of time. Additionally, the study aims to shed light on the current circumstances and challenges faced by these individuals and their families. Methods: Using Interpretative Phenomenological Analysis, this study analyses in-depth interviews conducted using respondent-driven sampling. Participants include three ex-serial volunteers who discontinued clinical trial participation and three key informants of deceased serial trial volunteers, from a remote mandal in the state of Telengana, South India. Results: Three superordinate themes emerged: Conclusion: Despite existing government regulations, the underground nature of recruitment networks and the persistent demand for willing participants enable these practices to thrive. Findings underscore the urgent need for a national registry, stronger oversight, and community-level awareness to ensure ethical, scientifically sound, and socially responsible clinical research in India.