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

Stephanie A. Kraft*, Devan M. Duenas, James G. Kublin, Kelly J. Shipman, Sean C. Murphy, Seema Kirti Shah

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

10 Scopus citations

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 languageEnglish (US)
Pages (from-to)49-60
Number of pages12
JournalJournal of Empirical Research on Human Research Ethics
Volume14
Issue number1
DOIs
StatePublished - Feb 1 2019

Keywords

  • deception
  • healthy volunteers
  • human infection challenge studies
  • payment for research participation
  • research ethics
  • undue influence
  • volunteer infection studies

ASJC Scopus subject areas

  • Social Psychology
  • Education
  • Communication
  • Law

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