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Exploring Ethical Concerns About Human Challenge Studies: A Qualitative Study of Controlled Human Malaria Infection Study Participants' Motivations and Attitudes

Authors :
Sean C. Murphy
James G. Kublin
Stephanie A. Kraft
Kelly J. Shipman
Devan M. Duenas
Seema K. Shah
Source :
Journal of empirical research on human research ethics : JERHRE. 14(1)
Publication Year :
2018

Abstract

Controlled human malaria infection (CHMI) studies deliberately infect healthy participants with malaria to test interventions faster and more efficiently. Some argue the study design and high payments offered raise ethical concerns about participants’ understanding of risks and undue inducement. We conducted baseline and exit interviews with 16 CHMI study participants to explore these concerns. Participants described themes including decision-making tension with friends and family, mixed motivations for participating, low study risks but high burdens, fair compensation, sacrificing values, deceiving researchers, and perceived benefits. Our findings do not support concerns that high payments limit understanding of study risks, but suggest participants may lack appreciation of study burdens, withhold information or engage in deception, and experience conflict with others regarding study participation.

Details

ISSN :
15562654
Volume :
14
Issue :
1
Database :
OpenAIRE
Journal :
Journal of empirical research on human research ethics : JERHRE
Accession number :
edsair.doi.dedup.....52aa3c449991863646df829f0bb89051