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.
| Original language | English (US) |
|---|---|
| Pages (from-to) | 49-60 |
| Number of pages | 12 |
| Journal | Journal of Empirical Research on Human Research Ethics |
| Volume | 14 |
| Issue number | 1 |
| DOIs | |
| State | Published - Feb 1 2019 |
Funding
This study was funded by the Bioethics Research Incubator Program at the Treuman Katz Center for Pediatric Bioethics at Seattle Children’s Research Institute. The authors would like to thank Kirsten Senturia and Frank Miller for their review of this manuscript.
Keywords
- deception
- healthy volunteers
- human infection challenge studies
- payment for research participation
- research ethics
- undue influence
- volunteer infection studies
ASJC Scopus subject areas
- Education
- Communication
- Social Psychology
- Law
