Intersex Studies: A Systematic Review of International Health Literature

Abstract

There is a need to better understand contemporary issues of nomenclature and group construction around people with intersex variations shaping health research and practices—including their framing within concepts like disorders of sex development (DSD), intersex, or the lesbian, gay, bisexual, transgender, and intersex (LGBTI) umbrella. This article reviews health literature in the broad field of Intersex Studies since 2015. It outlines the contexts, theoretical lenses, methods and participant numbers, framing of participants, and health findings around interventions evident in 61 sources. Sources came from the African region, American Canadian region, Asia-Pacific region, European region, and the Middle East. While health-related work was largely found in medical journals, it was also located in publications focused on a range of other fields including, for example, bioethics, education, and legal studies. The piece discusses the tensions between institutional expert-centered work with a traditional clinical/medical lens and the arguments found in a range of other patient-centered, community group–centered, and theory-centered sources applying innovative perspectives onto key issues. Liberal Constructivist, Bioethical Narrative Inquiry, Critical Intersex Studies, and Critical LGBTI Liberationist lenses have introduced a range of methods (from autobiographical analyses through to large-scale online surveys) to questions of the need for and processes of certain health care interventions and norms in the treatment of patients with intersex variations. Problematic practices in clinical health care and research are identified and discussed: particularly the lack of adequate information dissemination and consent-gleaning in areas ranging from anatomical photography through to application of “corrective” genital surgeries.