Do No Harm?: Damaging IRB Practice and Politics in Qualitative Research with LGBTQ+ Youth

• In Event: Justice-Focused Praxis in Qualitative Research With LGBTQ+ Youth

Abstract

Purposes:

The presentation will focus on our research team’s experience seeking a waiver of parental consent (WoPC) for LGBTQ+ youth in a youth participatory action research study (YPAR) from our IRB in a conservative state. We will review this experience as one case of IRB practice, reflecting the ways that institutions and IRBs can fail LGBTQ+ youth participants and their promise of doing no harm.

Perspectives:

We draw upon Mustanski’s (2011) call for a scientifically informed approach to to ethical and regulatory issues in conducting research with LGBTQ+ youth. Mustanski and other scholars (Kiperman, et al., 2020; Smith & Schwartz, 2019) emphasize that the ethical principles of respect for persons and beneficence provide justification for WoPCs for LGBTQ+ youth, and emphasize the harm that can be done to participants and knowledge in the field when WoPCs are not granted. We will also draw upon the work of these scholars to outline safeguards that can be implemented when using WoPCs, such as using assessments for adolescent decisional capacity and having an in loco parentis representative present during consent processes.

Modes of Inquiry and Data:

The data we will examine in this presentation were collected between 2022 - 2024, and include fieldnotes, institutional communications, and feedback from our IRB related to our pursuit of a WoPC for LGBTQ+ youth.

Key Arguments:

First, we will introduce the YPAR program that our team co-facilitated with our local LGBT Center, and our process for collaboratively addressing ethical issues. Second, we will review the process we followed to pursue a WoPC and emphasize that recommendations from literature are not relevant to all institutional contexts. For example, while literature recommends first meeting with your IRB to begin the process of seeking a WoPC, we found that our IRB will not meet with researchers. Third, we will tease out how IRB rejections of proposals for WoPCs can cause harm to LGBTQ+ youth and to our knowledge in the field. We will critique disparities in notions of vulnerability between the Belmont Report and IRB practice, and how IRB practice perpetuates deficit notions of LGBTQ+ youth. Finally, we will discuss alternative strategies that can be used when applications for WoPCs are rejected, including developing community review boards to supplement IRBs. We will contextualize these arguments with data about rising anti-LGBTQ+ sentiment and legislation in our state, and how political contexts can cause disparities in IRB decision making from state to state.

Scholarly Significance:

This presentation demonstrates the diverse ways in which IRB policy and practice can harm LGBTQ+ youth, and thus adds complexity to scholarly discussions regarding the credibility of IRBs. It is critical to document the ways in which IRBs promote harm in order to shift research practice to be more equitable for diverse populations of marginalized youth. Finally, this work furthers knowledge of practices researchers can employ to center justice in their work with LGBTQ+ youth, despite IRB decisions.

Authors

• Katherine Clonan-Roy, Cleveland State University

• Shereen Naser, Cleveland State University

• Elizabeth Goncy, Cleveland State University

• Kimberly Fuller, Cleveland State University