Volunteering for Infection: Participant Perspectives on a Hepatitis C Virus Controlled Human Infection Model

Area of Science:

• Bioethics
• Clinical Research
• Infectious Disease Research

Background:

• Ethical human subjects research necessitates participant safety and respect.
• Bioethical discussions often exclude the perspectives of research participants.
• Controlled Human Infection Model (CHIM) research presents unique ethical considerations.

Purpose of the Study:

• To address the gap in participant involvement in bioethical debates.
• To improve the ethical, efficient, and scientific design of CHIM studies.
• To incorporate the lived experiences of CHIM study participants into research design.

Main Methods:

• Analysis of personal experiences as study participants.
• Survey of 117 potential hepatitis C virus CHIM participants.
• Development of recommendations based on participant feedback and experience.

Main Results:

• Identification of key areas for ethical improvement in CHIM research.
• Participant-informed strategies for enhancing study design and conduct.
• Advocacy for increased participant agency and representation.

Conclusions:

• Full protocol transparency is crucial for ethical CHIM research.
• Higher participant compensation and rapid dissemination of results are recommended.
• Proactive engagement with volunteer advocacy organizations can enhance ethical oversight and participant representation.