Management of ‘disorders of sex development’/intersex variations in children: Results from a freedom of information exercise

Abstract

Non-therapeutic medical interventions on the bodies of children born with disorders of sex development (DSD)/intersex variations have been subject to increasing critical scrutiny. In response to recent criticism directed at the United Kingdom, and early moves to consider reform, we report on a freedom of information exercise that sought to evaluate whether National Health Service England is meeting international standards on optimal clinical management of DSD/intersex variations. The study explored what medical protocols are being followed to help inform potential reform, particularly with regard to non-therapeutic surgery. While the exercise revealed limited examples of promising practice, current protocols in the majority of Trusts appear unlikely to meet the complex needs of these children. We identify areas where significant improvement is needed, including data management, consistency in guideline use, composition of multidisciplinary teams and addressing disciplinary hierarchies within teams. These concerns sharpen criticisms of the lack of recognition of children’s rights in this context.

Lifespan healthcare transitions among individuals with intersex traits in Canada: a mixed-methods and qualitative study

“…Each aspect of our study highlighted a dearth of resources, expertise and community-driven supports for individuals living in Canada with intersex, which has resonance with Garland et al’s 6. UK study.…”

“…Each aspect of our study highlighted a dearth of resources, expertise and community-driven supports for individuals living in Canada with intersex, which has resonance with Garland et al’s . 6 UK study. Protocols are often driven by medical models centred on intervention, which can be problematic since the evidence to inform care is increasingly legally and ethically contested both outside of 8 23 and inside Canada.…”

“…At an individual level, intersex continues to be problematised by healthcare actions and social misconceptions 5. Like others globally, Canadians with intersex traits experience numerous health inequalities, including irreversible (genital) surgeries largely in childhood 5 6. While intersex refers to a large group of conditions that affect hormones, reproductive development and/or genital appearance, a ‘true’ prevalence is unclear7 and the idea of essential intervention is contested 8.…”

Ageing in obscurity: a critical literature review regarding older intersex people

“… 19 Medical professionals are reluctant to view hypospadias itself as an indication of intersex without the presence of cryptorchidism, the absence of one or both testicles from the scrotum. 20 However, as hypospadias surgeries are performed on infants that are incapable of consent, for the purpose of preventing future imagined social emergencies, 21 and are performed with the intention of surgically normalising a body to meet idealised, gendered notions of how a body should look and function, 19 there is cause for hypospadias inclusion in intersex arguments for bodily autonomy and against unnecessary medicalisation. Individuals who have undergone surgical alterations for their hypospadias may require long-term medical care, and the risk of complications tends to increase with each subsequent surgery.…”

Tackling the complexity of gender bias in primary care

“…However, they too may be adversely affected by bias in healthcare data and its application to bodies. There is some evidence that clinical coding in secondary care with regard to VSC varies between hospitals, resulting in limitations in the data available for epidemiological research, which is of particular importance with regard to surgical interventions; 13 to our knowledge the quality of this data in primary care has not yet been evaluated.…”