Informed by her experiences at the Queer Methodologies PhD School, bioethics researcher Debra Carroll-Beight envisions what an ethics of unknowing could bring to LGBTQIA+ Health Research.
Efforts to improve LGBTQIA+ health often begin with a call for visibility. We seek to name, track, and understand our communities through research which we then translate into data about issues like health disparities, service gaps, and demographic needs (Baker et al. 2023). This knowledge informs much-needed policy and practice change, but it also raises a quieter, more uncomfortable question: What does it mean to seek knowledge in contexts where knowing has historically been a form of violence?
Medical research has long been complicit in the marginalization of LGBTQIA+ people. From pathologizing homosexuality to treating gender nonconformity as a disorder, medical science has been a tool of regulation as much as care (Terry 1999; Drescher 2015). This is especially true for intersex individuals, those born with sex characteristics outside conventional male or female categories, who have often undergone irreversible procedures aimed at ‘normalizing’ their bodies, frequently without their knowledge or consent. In this context, the very act of making things known must be approached with caution. Not all stories are meant to be decoded, and not all silence is absence.
In this piece, I reflect on how queer methodologies, particularly the ethics of unknowing, can reorient research toward more ethical, community-responsive practices. While grounded in my work with intersex adults, these reflections apply more broadly to LGBTQIA+ health research, especially in fields that have traditionally privileged clarity, coherence, and normative modes of evidence. This reflection is informed by my experiences with the Queer Methodologies PhD School hosted by the Institute for Medical Humanities (IMH) at Durham University, where scholars gathered to examine how queer approaches can challenge dominant research logics and offer new ways of thinking about knowledge, responsibility, and care.
A Right to Be Unknowable
One of the most generative ideas for me was the notion of a right to be unknowable: the recognition that individuals should not be required to make themselves fully visible or legible in order to be treated with dignity. Through conversations with featured speakers and peer academics, I came to see queer methodology not only as a way of producing knowledge, but as a practice of holding space for what must remain undefined. The School helped me become more comfortable with discomfort, reminding me that ethical research does not depend on full disclosure, and that ambiguity and uncertainty can be legitimate and necessary elements of care.
Contemporary research ethics often assumes that knowledge is intrinsically good, to understand is to respect, and to study is to support. But this assumption falls apart when we consider the history of LGBTQIA+ engagement with medicine (Ahmed 2012). For many intersex people, medical records are incomplete, access to personal history is obstructed, and early interventions were authorized by others, often in secret (Davis 2015). In this landscape, knowing is not just a methodological aim but also a contested site of power.
In qualitative interviews, I often encounter narratives that resist legibility. Some participants speak in fragments. Others decline to name specific procedures or avoid linear storytelling altogether. These refusals are deliberate acts of agency, challenging the idea that researchers are entitled to full access and prompting reflection on how we engage with what is shared (Tuck and Yang 2014).
Queer methodology, a research approach that challenges normative assumptions and resists simplification, offers important tools for responding to these challenges. It treats ambiguity, contradiction, and open-endedness not as limitations, but as meaningful elements of ethical inquiry (Ghaziani and Brim 2019). In this framework, unknowing becomes both a stance and a practice, intentionally disrupting the expectation that research must always produce clarity.
Refusal as Resistance
Unknowing often takes shape in research through refusal. Refusal refers to when participants choose to withhold, redirect, or resist explanation, whether by declining to share certain details, narrating nonlinearly, or using language that defies easy categorization (Tuck and Yang 2014). In LGBTQIA+ health research, these moments tend to reflect not detachment but careful boundary-setting. Refusal becomes a way for participants to assert control over how, when, and whether their experiences are rendered legible to researchers or institutions.
Rather than standing apart from inquiry, refusal fits within a broader ethics of unknowing. This ethical stance asks us to consider that not all knowledge must be extracted or resolved. It challenges the idea that research should always clarify, and directs attention to what is partial, unsettled, or opaque. Within this frame, rigor does not equate to completion or coherence. It prioritizes respecting the boundaries of what participants are willing—or able—to share: recognizing that insight sometimes emerges not through explanation, but through texture, tone, and what remains unsaid.
For researchers collaborating with communities who have been historically over-studied and under-served, refusal is not a threat to knowledge, but knowledge itself (Benjamin 2019). It points us toward the ethical responsibility to listen without demanding disclosure, and to analyze without assuming mastery.
Accepting Ambiguity and Ambivalence
Queer methodologies are not just about who we study; they’re about how we study. They ask us to examine our own assumptions as researchers: what counts as data, whose stories are considered dependable, and what forms of knowledge are allowed to shape policy and practice. They draw from queer theory’s long-standing critique of normativity in relation to gender, sexuality, and embodiment and apply it to the process of inquiry itself.
But queer methodology also has something specific to offer the medical humanities: a way to work with, rather than against, the ambiguity and ambivalence that so often characterize health experiences. Queer methodology encourages a more inclusive and reflexive approach to evidence and experience. It shifts our orientation from correction to coexistence. From fixing to witnessing.
In my own work with intersex participants, this can mean allowing for narratives that do not resolve. It can mean letting medical ambivalence exist on its own terms, without forcing it into neat ethical categories. It can mean taking seriously the ways people live with partial knowledge of their own bodies and the ways that knowledge is continually shaped by institutional and interpersonal encounters.
Medical humanities have long sought to expand the boundaries of what counts as evidence and whose voices matter in health research (Dalton and Ledin 2024). The field embraces lived experience, creative methods, and interdisciplinary inquiry. Yet even here, there can be subtle pressures to translate experience into insight, story into meaning, or silence into explanation.
Bringing queer methodologies into medical humanities, particularly through the lens of unknowing, can help us resist these pressures. It reminds us that some of the most important contributions to research are not the answers we extract but the questions we learn to hold. It asks us to take seriously the emotional and intellectual burden that can come with being fully understood on someone else’s terms, especially in medical and research settings.
Embracing Uncertainty
This is not a call to abandon knowledge-making; it is a call to do it differently. To embrace the uncertainty that comes with working ethically in spaces marked by harm. To treat ambiguity not as a threat to credibility, but as a guide for how to listen better, interrogate less, and honor what is offered on its own terms.
To conduct research ethically with LGBTQIA+ communities, particularly those who have been harmed in the name of medical progress, we must be willing to relinquish some of the assumptions we carry about knowledge itself. We must resist the urge for clarity at all costs, and instead embrace approaches that allow for uncertainty, contradiction, and complexity.
Queer methodologies, when framed through the ethics of unknowing, offer a way forward. They reframe refusal as a form of resistance, one that protects complexity rather than obscuring truth. They open space for stories that are partial, interrupted, or deliberately opaque. And they remind us that to research with, rather than on, requires more than good intentions. It demands a deep rethinking of what we mean by rigor, respect, and responsibility.
About the author
Debra Carroll-Beight is a bioethics researcher whose work examines how medicine engages with marginalized bodies and identities. She is currently completing her PhD at Case Western Reserve University. @debrabeight.bsky.social
About the 2025 Medical Humanities PhD School
This post is part of a collection of contributions from attendees of the Queer Methodologies in Medical Humanities PhD School which took place in Durham in March 2025. The PhD school was funded by Wellcome, as part of the Discovery Research Platform for Medical Humanities at Durham University, and the Centre for Medical Humanities and Bioethics (CMHB) at Linköping University.
All articles in this collection can be found on this page: 2025 Queer Methodologies in Medical Humanities PhD School.
References
Ahmed, Sara. 2012. On Being Included: Racism and Diversity in Institutional Life. Durham, N.C: Duke University Press.
Baker, Kellan, Eleanor Sarkodie, Jennafer Kwait, Caroline Medina, Asa Radix, and Risa Flynn. 2023. “Advancing Sexual and Gender Minority Population Health Using Electronic Health Record Data.” American Journal of Public Health 113 (12): 1287–89. https://doi.org/10.2105/ajph.2023.307467.
Benjamin, Ruha. 2019. Race after Technology: Abolitionist Tools for the New Jim Code. Medford, Ma: Polity.
Dalton, Benjamin, and Chase Ledin. 2024. “Queer Medical Humanities.” The Year’s Work in Critical and Cultural Theory, July. https://doi.org/10.1093/ywcct/mbae005.
Davis, Georgiann. 2015. Contesting Intersex: The Dubious Diagnosis. New York University Press.
Drescher, Jack. 2015. “Out of DSM: Depathologizing Homosexuality.” Behavioral Sciences 5 (4): 565–75. https://doi.org/10.3390/bs5040565.
Ghaziani, Amin, and Matt Brim. 2018. “Queer Methods: Four Provocations for an Emerging Field.” In Imagining Queer Methods, edited by Amin Ghaziani and Matt Brim, 3–27. New York: NYU Press.
Terry, Jennifer. 1999. An American Obsession: Science, Medicine, and Homosexuality in Modern Society. Chicago: University Of Chicago Press.
Tuck, Eve, and K. Wayne Yang. 2014. “R-Words: Refusing Research.” In Humanizing Research, edited by Django Paris and Maisha Winn. Thousand Oaks: SAGE.
