Reflections on Risk during Shifting Paradigms

One of the challenges facing both IRB professionals and researchers is the changing landscape of the country and its impact on many participant populations. It is always our job to consider whether the risks posed by a study are outweighed by the potential benefits, and to ensure that any and all risks are made clear to participants. Presently, some risks have the potential to be magnified, particularly those affecting already marginalized communities such as immigrant and transgender communities. We need to consider not only short-term risks, but long-term risks amidst a setting of uncertainty. Studies have the potential to document behavior that is legal or accepted one month but which is illegal or stigmatized behavior the next.  We must also consider whether studies present greater than minimal risk, meaning whether potential harms introduced by a study exceed those ordinarily encountered in daily life.

While IRB professionals do take a special interest in ethics and people, we are not experts in the specifics of all areas of research. We rely on researchers to share their expertise, as it informs their judgement on the issues and populations they study. With that said, we also do not want to lose sight of the fact that no one is more aware of the risks facing a community than the members of that community. We do not want to create unnecessary barriers to researching the issues affecting these communities, and we want to preserve participants’ right to make informed decisions about whether they want to assume risks in the interest of potential personal or community benefit.

Are you a researcher who works with marginalized or otherwise vulnerable populations? Would you like to be a part of a larger conversation about the importance of researching issues affecting oppressed populations and what that looks like in 2026? Would you be interested in contributing to a workshop or panel, or do you have other ideas for how we can continue this conversation? Please reach out to [email protected].

 

Claire Spelkoman, IRB Coordinator