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Study Investigators Provide Research Ethics Training to Community Members
July 1, 2025 5 minutes read
By Stacey Kusterbeck
Growing numbers of researchers are seeking to involve the community in the research process. To fully participate, though, community members need research ethics training. Many institutions require researchers involved in human subjects research to take Collaborative Institutional Training Initiative (CITI) Program training. Now researchers are creating training resources specifically for community members.
“Existing CITI training is kind of heavy for non-researchers. I wanted to make sure community partners had a better opportunity to get involved,” says Brandon Brown, MPH, PhD, professor of medicine at UC Riverside School of Medicine.
Brown developed CITI modules to facilitate community members’ ability to be part of the research team. This new mini-course will be offered as an alternative to the basic human subjects research courses that the CITI Program currently offers. The course provides an overview of human subjects research principles and explains the rights and responsibilities of a community partner researcher. Each module is video-based and is approximately 15-20 minutes, including quiz questions and case studies. “The course’s examples reflect the real-world scenarios community researchers will likely encounter while conducting research,” says Brown.
There is a need to meaningfully involve youth researchers in studies that directly affect them, according to Irène Mathieu, MD, MPH, a pediatrician and public health researcher at the University of Virginia. Mathieu and colleagues launched the Teen Wellness Team, a Youth Participatory Action Research (YPAR) initiative. The initiative is part of the Wellness And Youth Social action (WAYS) Lab, which investigates youth mental health and well-being.
The research ethics training program is for a YPAR team that was involved in a study on adolescent health. “The goal was to engage youth as equal partners in designing, conducting, and analyzing research. In YPAR, young people are included not as subjects, but as co-researchers,” says Angela Gummadi, MBBS, a research specialist at WAYS Lab.
Including young people throughout the research process reflects the core principles of YPAR: that youth are experts in their own lives and must have a seat at the table when decisions about their health and well-being are being made. In the Teen Wellness Team’s research, young people are involved in the following ways:
- identifying relevant research questions based on lived experience;
- designing study instruments and protocols;
- conducting data collection and analysis;
- presenting findings and co-authoring manuscripts; and
- brainstorming and enacting action outcomes.
“To participate fully and ethically, youth researchers needed a solid understanding of how to protect human subjects — in this case, their peers — as participants in the study,” says Gummadi. However, existing research ethics training, such as the CITI training that the institution uses, is geared toward adult academic researchers and largely focused on biomedicine.
“To address this gap and ensure compliance with IRB requirements without overwhelming the youth, who were high school students at the time, with complex biomedical jargon, we created a youth-friendly, developmentally appropriate version of CITI Program training,” says Gummadi.1
First, two members of the WAYS Lab team conducted a literature search for youth-accessible training research, but they found none. The researchers decided to create a developmentally appropriate adaptation of the CITI Program’s Researcher Basic Course — No Prisoners. The adult team members of the WAYS Lab consulted with some youth team members. Together, they designed a version of the training that was developmentally appropriate and engaging. “We focused on essential research ethics concepts, augmenting them with relatable examples and multimedia elements, such as animations, illustrations, and voiceovers, per youth’s stated learning preferences,” says Gummadi.
Graphic design tools, such as iMovie, Adobe Illustrator, Freepik, and Canva, helped to bring the training to life. To encourage completion and boost retention, adult researchers went through the training alongside the youth rather than youth doing it independently.
The training was held in three sessions, each lasting 60 to 90 minutes, and included visual storytelling, simplified scientific language, and case examples that were meaningful to adolescents. One module used a YouTube video to explain the Tuskegee syphilis study to convey why ethical standards in research are so critical. Other modules used fictional stories to explain complex concepts, such as conflict of interest, in a way that resonated with the students’ real-life experiences.
Mathieu facilitated discussions that encouraged youth to reflect on how these ethical principles applied to their own research project. Mathieu asked questions like, “What are the risks and benefits of our study?” and “How could we manage risks and maximize benefits?”
Two youth successfully completed the modules and received their CITI certificates. They then were added to the IRB protocol for the mental health project they had helped design. “Their feedback reflected a strong grasp of ethical principles and highlighted the value of interactive and youth-friendly content,” says Mathieu.
For researchers who want to engage youth in the research process, Mathieu says these are top priorities:
- Establish mutual respect and try to eliminate internalized “adultism” and other forms of bias adult researchers may bring.
- Create resources and mentorship opportunities tailored to youths’ preferences and developmental levels. “We invited adults we know in the community as visitors to our team meetings. We asked youth what they wanted to learn about before selecting people to invite, and we let youth lead the conversation with our speakers in informal, informational interviews,” says Mathieu. Youth were able to meet and learn from psychologists, public health researchers, emergency medical technicians, legislators, physicians, health lawyers, chaplains, educational researchers, and many more.
- Ensure ongoing support and professional development, rather than one-time training. “Youth were able to express their needs not only during our meetings, but also via email and our secure texting app. We checked in during critical periods of the research project to ensure youth felt competent and confident in their role,” says Mathieu.
- Compensate youth fairly for their contributions and time.
- Include youth in any abstracts or manuscripts presenting the research findings.
- Incorporate non-traditional research products or outcomes that can directly benefit youth and their communities. “Our team created three zines (small magazines), each geared toward different audiences, which display our results creatively and graphically. The zine for youth includes interactive components so that other young people can reflect and act on our findings, in addition to learning what we found,” says Mathieu.
Mathieu says these are important questions for IRBs to ask when reviewing study protocols involving the input of youth:
- How have youth been prepared to engage in the ethical conduct of research?
- Have they completed any appropriate ethics and research training?
- How is assent/consent handled for youth researchers and how will power dynamics be addressed?
- How will confidentiality be maintained when youth research team members also are members of the community where a project will take place?
- Are there protections in place for the emotional and psychological well-being of youth researchers, especially when the research touches on sensitive topics?
- How will youth researchers’ voices be valued and sustained across the lifecycle of the study?
The goal, says Mathieu, is “an ethical and inclusive research process that centers [on] youth voices and ensures that research involving adolescents includes their perspectives from start to finish.”
Stacey Kusterbeck is an award-winning contributing author for Relias. She has more than 20 years of medical journalism experience and greatly enjoys keeping on top of constant changes in the healthcare field.
Reference
1. Gummadi AKS, Griffin K, Contractor F, et al. Building ethical foundations in research: Adaptation of a research ethics training program for adolescents. Ethics Hum Res. 2025;47(2):34-40.
Tailored ethics training empowers community and youth researchers to engage meaningfully in human subjects research. These programs foster inclusion, mutual respect, and ethical literacy, enabling more equitable, participant-informed research processes and Institutional Review Board engagement.
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