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

TL;DR

This study explores the experiences of ex-serial clinical trial volunteers in South India, revealing the financial pressures, health impacts, and systemic issues they face.

Contribution

The paper provides a novel phenomenological analysis of ex-serial clinical trial volunteers' lived experiences in South India.

Findings

Financial desperation led to repeated clinical trial participation, resulting in physical and emotional deterioration.

Families often learned about trial involvement only after adverse events or death, indicating poor transparency.

Systemic gaps and underground recruitment networks enable unethical practices despite existing regulations.

Abstract

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.

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.

Three superordinate themes emerged: A journey of strain and stain, Transcending all turmoil to remain acceptable to system and society, and Agony of the family, each with five subthemes. The personal narratives highlight how financial desperation coerced them into serial participation. Over time, repeated enrolment led to physical and emotional deterioration, concealment, stigma, and family distress. Families discovered trial involvement only after adverse events or death, highlighting systemic gaps in transparency and post-trial care.

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.