Capturing the medical gaze regulating medical photography of minors with intersex variations

A contentious issue within medical management of innate variations of sex characteristics (or intersex variations, IVSC) is the impact of medical photography. Historically, egregious breaches of human rights, lack of dignity and respect, and pathologization have characterized medical photography of people with IVSC. Since the mid-20th century, medical management of IVSC has focused on children, resulting in a shift to photographing minors. The imagery focuses on genitals and, with the development of digital imaging technology, is widely shared within medical circles and disseminated in medical journals and books. Medical photography is regulated within privacy law and policy. Regulation relevant to photographs of the genitals of infants and children with IVSC is scant, despite evidence that actual practices raise significant risks of harm, including lack of personal consent, poor documentation, poor data storage and security, and the potential for images to escape beyond the control of health professionals. There is little regulation of the processes of medical photography, which are known to contribute to very poor mental health outcomes for people with IVSC. This article provides detailed recommendations for reform of law and policy regulating medical photography of children with IVSC to prioritize their well-being and mental health.