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 healthrelated 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 expertcentered 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.

Sex and gender differences and biases in artificial intelligence for biomedicine and healthcare

“…Moreover, differences in lifestyle factors that are associated with sex and gender, such as diet, physical activity, tobacco use and alcohol consumption, also correlate with the epidemiology of diseases [9][10][11] . Nonetheless, there are still open questions regarding health differences across the gender spectrum, reflected by the scarcity of studies dedicated to intersex, transgender and nonbinary individuals 12,13 . Initiatives, such as the Global Trans Research Evidence Map 14 , foster research access in this area to improve our understanding of the effects of medical interventions on health and life quality across the gender spectrum.…”

A national study on the physical and mental health of intersex adults in the U.S.

“…Following extensive advocacy by intersex people, several countries, international bodies, and American medical groups, including Human Rights Watch, the World Health Organization, and Amnesty International, have recommended delaying surgeries so that intersex people themselves can make informed decisions about what is best for them [ 7 , 9 – 13 ]. Alongside this, a new community-centered research literature is beginning to emerge, highlighting intersex voices and experiences [ 14 ].…”

Stigma as framed onYouTube: Effects of personal experiences videos on students’ beliefs about medicalizing intersex

“…In the 1990s, intersex people narrated their experience to challenge medical practices (Chase, ; Dreger, ), some experts called for a moratorium on medical intervention (Diamond & Sigmundson, ), a case study long used to justify intervention was exposed for abusive treatment and scientific fraud (Colapinto, ), and a novel with an intersex protagonist received widespread critical acclaim (Eugenides, ). Qualitative social research has since often confirmed that people with intersex characteristics frequently experience stigma, often in medical encounters that are ostensibly aimed at supporting their well‐being (see e.g., Alderson, Madill, & Balen, ; Boyle, Smith, & Liao, ; Davis, ; Endberg, Möller, Hagenfeldt, Nordenskjöld, & Frisén, ; Meyer‐Bahlburg, Khuri, Reyes‐Portillo, & New, ; Preves, , see Jones, , for a recent review).…”

“…anecdotal healthcare information on YouTube often contradicts information put forward by medical professionals (Madathil et al, ). YouTube videos with personal narratives are preferred over those that foreground public health information alone (Yiannakoulias et al, ), and autobiographical research remains the most common form of social science evidence in intersex studies (Jones, ). In recent years, a greater number of personal narrative videos pertaining to people with intersex characteristics have appeared online (see The Interface Project, n.d., in addition to those described below).…”