Sex, size, and surgeries: Reflections of societal contestations in clinical research of differences of sex development/intersex

Clinical practices in the field of differences of sex development (dsd/intersex) are subject of radical criticisms by activists, scholars, politicians and the United Nations. However, to what extent are these criticisms and contestations reflected upon in clinical research? In this paper, we identify four areas of contestation around which feminist, intersex and transgender scholars and activists mobilize. Firstly, they question clinical concepts and categorizations. Secondly, they question the standard of the healthy or normal body. Thirdly, they criticize current healthcare practices and the doctrine of medical necessity, especially when it comes to interventions in intersex children. And fourth, they challenge the notions of specialized medical expertise and authority by supporting experience expertise, shared decision making and patient-centred care. These contestations of norms and practices regarding sex- and gender-related health and healthcare are discussed in social science and multidisciplinary journals, but the discussions in disciplinary clinical journals remain narrowly confined to clinical issues. Given the potential implications of societal contestations for the legitimacy of and demand for their healthcare interventions, this disciplinary bias warrants a closer look. Next, this paper presents our qualitative content analysis of a leading clinical journal, the European Journal of Endocrinology (EJE), assessing the impact of societal contestations in clinical research regarding dsd/intersex. It reveals persistent binary thinking regarding sex and gender, an obsession with (ab)normal size of bodies and genitalia, and a strong belief in medicalization turning individuals into patients. Yet our analysis also shows instances of change.