Navigating Challenges with IRB Review for Community‐Engaged Research with Transgender Youth in the United States

Navigating the complexities of institutional review board (IRB) determinations in participatory research with transgender youth is essential for prioritizing youth voices and establishing equitable opportunities for research participation. We codesigned an online interactive sexual education tool with an advisory board of transgender youth as lived-experience experts. Early codesign efforts revealed challenges in classifying advisory board members as either research participants or study team members and highlight the frequent irreconcilability between participatory approaches and IRB standards. We describe challenges our research team encountered in the IRB review process and discuss lessons learned, emphasizing the need for flexible IRB guidelines, ongoing consent practices, greater attention to power dynamics, and enhanced IRB education on participatory research, particularly with transgender youth. These lessons highlight critical insights regarding youth involvement in participatory research that are essential for prioritizing youth voices in the creation of effective, youth-led interventions.

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Publication Details

Journal
Ethics & Human Research
Published
2025-11-01
DOI
https://doi.org/10.1002/eahr.70002
Primary Topic
Mental Health and Patient Involvement
Type
article
Field-Weighted Citation Impact
0.00
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article

Navigating Challenges with IRB Review for Community‐Engaged Research with Transgender Youth in the United States

Diana M. Tordoff, Ruby Lucas, Alic G. Shook, Julie A. Kientz et al.
Ethics & Human Research
Mental Health and Patient Involvement
article

Navigating Challenges with IRB Review for Community‐Engaged Research with Transgender Youth in the United States

Diana M. Tordoff, Ruby Lucas, Alic G. Shook, Julie A. Kientz, Kym Renee Ahrens, Molly R. Altman, Calvin Alan Liang, Jenny A. F. Skytta
article en

Abstract

Navigating the complexities of institutional review board (IRB) determinations in participatory research with transgender youth is essential for prioritizing youth voices and establishing equitable opportunities for research participation. We codesigned an online interactive sexual education tool with an advisory board of transgender youth as lived-experience experts. Early codesign efforts revealed challenges in classifying advisory board members as either research participants or study team members and highlight the frequent irreconcilability between participatory approaches and IRB standards. We describe challenges our research team encountered in the IRB review process and discuss lessons learned, emphasizing the need for flexible IRB guidelines, ongoing consent practices, greater attention to power dynamics, and enhanced IRB education on participatory research, particularly with transgender youth. These lessons highlight critical insights regarding youth involvement in participatory research that are essential for prioritizing youth voices in the creation of effective, youth-led interventions.

Ethics & Human ResearchVol. 47(6)
Northwestern University (US), University of Hawaiʻi at Mānoa (US), Wested (US), University of Washington (US), Northwestern University (PH), Seattle Children's Hospital (US), Institute of Child Health (IN), Stanford Medicine (US), Seattle University (US)
Openalex Percentile: Top 49%
Mental Health and Patient Involvement
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Navigating Challenges with IRB Review for Community‐Engaged Research with Transgender Youth in the United States — Diana M. Tordoff, Ruby Lucas, et al. · Ethics & Human Research (2025) | TGRS Research Map | TGRS