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Structural Influences on Consent Decisions in Participatory Health Research in Eswatini.

Michelle R BrearPinky N ShabanguKarin HammarbergJane Fisher
Published in: Journal of empirical research on human research ethics : JERHRE (2023)
Recognition that structural factors influence participation decisions and have potential to coerce participation, emerged relatively recently in research ethics literature. Empirical evidence to elucidate the nature of "structural" coercion and influence is needed to optimise respect for autonomy through voluntary informed consent. We present findings from ethnographic data about community co-researchers' experiences designing and implementing demographic and health survey consent procedures in participatory health research in Eswatini. Informed by Bourdieu's sociological theory of multiple types of capital/power, our findings detail structural influences on research participation decisions, highlight the inherently power-laden dynamics of consent interactions, and suggest that to be optimally ethical, research ethics principles and practices should consider and account for structural power dynamics.
Keyphrases
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  • healthcare
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  • big data
  • mental health
  • systematic review
  • machine learning
  • quality improvement
  • climate change
  • data analysis