In lieu of an abstract, here is a brief excerpt of the content:

  • Youth Giving Voice in Research Ethics
  • Armida Ayala

About fourteen years ago, I began a partnership as an evaluator with a community outreach project aimed at encouraging young girls in elementary school to seek a higher education because they were underrepresented in attaining college degrees. This experience turned out to be one of the most transformative in my life. Through this longitudinal study, I began to mentor a bright, energetic, young girl when she was ten years old. At the time I met her, I was in transition from being a researcher in public health to leading an Institutional Review Board (IRB) at a large research program. Mentoring her over the years and transitioning into the field of research ethics, significantly shaped how we both view research from a position of power, privilege and trust, between researchers/institutions and participants. This experience later draped and bent how we approached the participation of culturally diverse youth in research.

During the course of our mentor/mentee relationship, I started my job at the IRB and continued to do research. I began growing into a deeper consciousness into the field of human subject protections. My view of research shifted. More than ever, I felt that conducting research was a privilege and not a right. This was evident in my new role as an advocate for human subjects, and in the often meaningful but difficult conversations with my mentee about the power imbalances between researchers and participants. As she grew older, we discussed her first experience in research with me as the researcher. She shared that her perception of the power I represented as an authority figure, during our first encounter, led her to feel pressured to participate. When I asked her why she decided to participate, she responded that it was because she trusted me when I reassured her that she didn’t have to and it was entirely her decision even if her mother consented. I reflected about the communication gap still present in the researcher–participant interaction.

I was consistently present in her life, guiding her through her successes and challenges. Admirably, she successfully continued her education and completed a master’s degree from a prominent university much earlier than expected. As the time passed, our trust grew stronger and there was a gradual shift in our roles from mentor–mentee to peers; she eventually became a colleague. We met regularly for the years to come. I was often stimulated during our sessions because she constantly challenged me about the dominance of researchers in the field of research ethics. I never knew what controversial topics she was going to come up with next. Some of our interactions were to guide her with her school projects, but in some others, I felt she was shaking the very foundation of how I engaged communities. Our relationship had some setbacks, many times I failed to understand her point of view. Sometimes she didn’t understand mine, but somehow we became efficient and trusted partners.

What began to bother me, was how blind I had been about the lack of participation of youth in research ethics. I started to notice that both at [End Page E1] conferences and our IRB meetings the voice of young people like her was missing, in spite of the multiple studies targeting them. Most IRBs I knew, had no young patients or former research participants as members. Having never had young people in our IRB, I didn’t know where to start to include them. Working with them was challenging, time consuming and costly. I trusted that our IRB had the expertise to make decisions for youth, so I was slow at making changes in our membership to include them.

Then, there was a study in particular that caused me to consider including the voice of youth. The study was a diabetes intervention targeting children and adolescents. I consulted with my mentee and other youth for community input. They gave me an earful! They talked about issues that concerned them like trust, power, privilege, and equal treatment and respect for their culturally diverse communities from researchers and institutions. They were frustrated that there were no youth in IRBs, especially youth...

pdf

Share