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

International Journal of Feminist Approaches to Bioethics 15 (2):51-75 (2022)
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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.

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Mariëtte Van Den Hoven
Utrecht University

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Four Faces of Fair Subject Selection.Katherine Witte Saylor & Douglas MacKay - 2020 - American Journal of Bioethics 20 (2):5-19.
Elucidating the concept of vulnerability: Layers not labels.Florencia Luna - 2009 - International Journal of Feminist Approaches to Bioethics 2 (1):121-139.

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