“Who Am I to Judge These Things”: Intersectional Dimensions of Self-Silencing of People with a Neuromuscular Disease in a Clinical Trial

Abstract

Ethical guidelines protecting medical research participants have been criticized for stripping the sociocultural contexts of research. This critique is urgent considering ongoing calls to account for participant diversity in recruitment and inclusion procedures. Our intersectional analysis of illness narratives explores how sociostructural factors might play a role in participants’ exposure to research-related harm in clinical trials. Although widening participation does respond to generalizability concerns, we argue that gendered, classed, and ableist processes of self-silencing could simultaneously enhance risk of harm for participants with multiple oppressed identities. To prevent this, researchers might actively involve participants when designing trials.