Researchers often use terminology to define their participant groups that is rooted in a clinical understanding of the group's shared identity(ies). Such naming often ignores the ways that the individuals who comprise these populations identify themselves. One oft-cited benefit of patient-oriented or community-engaged research is that language is local and relevant to impacted communities. This paper aims to contribute to the literature on how this local and relevant language can best be established. We ask how researchers can identify and implement accurate terminology, even when divergent perspectives exist within the communities involved. We draw from our experience with the Expanding Plasma Donation in Canada study, a community-engaged research study, which explored the views of people impacted by the "men who have sex with men" (MSM) blood donation policies in Canada. We describe the collaborative process through which we came to a consensual naming of this population, the challenges we faced, and a set of guiding principles we used to address them. We did not find an all-encompassing term or acronym that worked for all stages of research. Instead, we offer a set of guiding principles that can aid researchers engaging in a similar process: harm reduction, consent and transparency, collaboration and community involvement, recognition of missing voices, and resisting and/or restructuring oppressive standards.
Keywords: Community-based; Ethics; LGBTQ+; MSM; Plasma donation; Public health; Queer; Research practices; Sexual identity.
The words and labels that researchers use to describe the communities they study does not always resonate with the actual members of those communities. Doing research in partnership with members of socially disadvantaged groups can help to ensure that the language used in the research is relevant, accurate, and respectful. Researchers studying issues related to men who have sex with men often struggle with knowing what term to use to describe this group of people. While many people may identify as “gay”, “queer”, “bisexual”, or any other term, there are many men who do not identify with these labels but also have sex with men. Previous research on this topic is usually focused on arguing that a specific term or acronym should be adopted. As part of a larger research program to support more inclusive plasma donation, the current paper describes the process our research team undertook to ethically describe this complex community of diverse men who have sex with men. Rather than choosing one specific label to describe the community members in all situations, we describe a set of guiding principles that can be used to help researchers flexibly navigate language depending on the situation and context.
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