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

Floor Cuijpers, ME Muntinga, M Bakker, Gönül Dilaver, MA van den Hoven, P Verdonk

Research output: Contribution to journalArticleAcademicpeer-review


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.
Original languageEnglish
Pages (from-to)51
Number of pages75
JournalInternational Journal of Feminist Approaches to Bioethics
Early online date30 Aug 2022
Publication statusPublished - 30 Aug 2022


  • clinical trials
  • diversity in research
  • intersectionality
  • populations
  • research ethics and social justice
  • self-silencing
  • vulnerability

Cite this