Exploring Ethical and Emotional Experiences in Stem Cell Clinical Trials for Neurodegenerative Diseases
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Abstract
Regenerative medicine represents a rapidly evolving field that aims to restore or replace damaged tissues using biological interventions such as stem cell therapy, offering hope to patients with neurodegenerative diseases. Within this scientific landscape, understanding patients’ lived experiences during participation in regenerative clinical trials has become increasingly significant, particularly as these experiences intertwine ethical, emotional, and existential dimensions. However, existing studies have primarily focused on clinical outcomes, leaving limited understanding of how patients construct meaning and negotiate moral and psychological challenges within such trials. This study applies an Interpretative Phenomenological Analysis (IPA) to explore how participants experience, interpret, and derive meaning from their involvement in stem cell therapy trials for neurodegenerative conditions. Using semi-structured interviews with twelve participants, the analysis identified four overarching themes: ethical decision-making, the tension between hope and uncertainty, embodiment and self-redefinition, and the pursuit of ethical–emotional equilibrium. These findings reveal that participation in regenerative clinical trials extends beyond biomedical engagement it represents a transformative process where patients navigate vulnerability and agency through moral reflection and emotional adaptation. The study deepens current understanding by framing regenerative medicine as both a scientific and human endeavor, emphasizing that meaning-making is central to ethical patient participation. The results offer valuable implications for clinical communication, ethical policy, and future patient-centered trial design in regenerative medicine. This study received ethical approval from the Institutional Review Board, ensuring adherence to established research standards. However, the study has limitations, including a relatively small sample size and reliance on self-reported experiences, which may limit transferability to broader patient populations.
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