This article examines the ethical complexities of conducting qualitative research in highly medicalised settings involved in the healthcare of people with innate variations of sex characteristics (VSC). Drawing on a series of qualitative studies conducted across different European clinical contexts, I show how institutional norms, epistemic hierarchies, and researcher positionality shape the terrain of ethical practice in environments historically structured by pathologisation, epistemic injustice, and institutional opacity. While procedures such as informed consent and ethical review remain essential, they are insufficient for navigating the relational and affective tensions that characterise VSC-related research. Integrating insights from feminist science studies, agential realism, epistemic injustice theory, and critical intersex scholarship, I develop response-ability as a situated ethical orientation. Rather than an individualised stance, response-ability foregrounds how researchers and research worlds emerge through intra-action, and how ethical obligations take shape within shifting configurations of credibility, trust, and institutional power. The analysis is structured around three interconnected vignettes: (1) Rethinking responsibility, which illustrates how ethical authority is negotiated within clinical hierarchies; (2) Consent beyond the form , which explores how participation is shaped by affective trust, institutional risk, and professional vulnerability; and (3) Researcher role and institutional belonging , which traces how legitimacy and access are continually reconfigured across disciplinary, linguistic, and cultural boundaries. Together, these reflections argue for an ethics of situated accountability: one that is relational, temporal, and attentive to the uneven distribution of interpretive authority in VSC-related healthcare. The article concludes with a set of practical considerations for researchers working in this field and in other sensitive clinical contexts.
Ethics beyond the form: Response-ability in intersex healthcare research
Prandelli M.
2026
Abstract
This article examines the ethical complexities of conducting qualitative research in highly medicalised settings involved in the healthcare of people with innate variations of sex characteristics (VSC). Drawing on a series of qualitative studies conducted across different European clinical contexts, I show how institutional norms, epistemic hierarchies, and researcher positionality shape the terrain of ethical practice in environments historically structured by pathologisation, epistemic injustice, and institutional opacity. While procedures such as informed consent and ethical review remain essential, they are insufficient for navigating the relational and affective tensions that characterise VSC-related research. Integrating insights from feminist science studies, agential realism, epistemic injustice theory, and critical intersex scholarship, I develop response-ability as a situated ethical orientation. Rather than an individualised stance, response-ability foregrounds how researchers and research worlds emerge through intra-action, and how ethical obligations take shape within shifting configurations of credibility, trust, and institutional power. The analysis is structured around three interconnected vignettes: (1) Rethinking responsibility, which illustrates how ethical authority is negotiated within clinical hierarchies; (2) Consent beyond the form , which explores how participation is shaped by affective trust, institutional risk, and professional vulnerability; and (3) Researcher role and institutional belonging , which traces how legitimacy and access are continually reconfigured across disciplinary, linguistic, and cultural boundaries. Together, these reflections argue for an ethics of situated accountability: one that is relational, temporal, and attentive to the uneven distribution of interpretive authority in VSC-related healthcare. The article concludes with a set of practical considerations for researchers working in this field and in other sensitive clinical contexts.
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