Fixing bodies and shaping narratives: Epistemic injustice and the responses of medicine and bioethics to intersex human rights demands

Abstract

Children with innate variations of sex characteristics (also termed differences of sex development or intersex traits) are routinely subjected to medical interventions that aim to make their bodies appear or function more typically female or male. Many such interventions lack clear evidence of benefit, they have been challenged for thirty years, and they are now understood to violate children’s rights to bodily autonomy and bodily integrity. In this paper I argue that these persist in part due to epistemic injustices and biomedical authority. Epistemic injustices include limited disclosure of current practices, the systemic marginalisation of community voices and psychosocial professionals, and attempts to discredit or misrepresent testimony. Bioethics has largely failed to change medical practice, and sometimes plays a role in perpetuating epistemic injustices. I find that the development of an intersex movement provides opportunities for epistemic justice and liberation by engaging with other disciplines and promoting oversight of medical decision-making. The paper draws particularly on Australian sources, including internationally influential ethical principles.

The Origins of Gender, not Sex: Evolution and the Reproductive Axis

“…Variations upstream that affect the formation of reproductive structures can lead to chromosomal variations. Downstream variations in testis and ovary development can result in disorders related to absent or excessive androgen levels or malfunctioning receptors (Carpenter, 2023;Diamond, 2010).…”

Revisiting the Claims of Past Medical Innocence and Good Intentions

“…3 Carpenter (2024) points out that medical "claims about change" have been a useful political tool in hindering legislative regulation of medical management of people with innate variations of sex characteristics (p. 7).…”

“…Their treatment notably comprises deferrable surgical and hormonal treatments without personal informed consent, examinations, and pathologizing language. When these children get older and some manage to impart their lived experiences, question treatment, and demand human rights protection through a collectivized position of intersex subjects (Preves 2006; Bastien Charlebois 2019), they are dismissed or misrepresented (Chase 1998;Carpenter 2024). North American and European pediatric urology and pediatric endocrinology medical associations as well as authorities in the field claim that these intersex human rightsbased perspectives are inapplicable to current management of what they now frame as Disorders of Sex Development diagnoses.…”

Medical necessity and consent for intimate procedures

“…9 In a parallel set of developments, the global movement for intersex rights has been gaining steam of late, with multiple countries recently passing or considering legislation to prohibit medically unnecessary genital 'normalisation' surgeries in children with diverse sex characteristics: that is, in persons too young to consent. [14][15][16][17] This has coincided with increasingly vocal opposition to nontherapeutic infant penile circumcision for similar reasons, [18][19][20] part of a broader, international human rights campaign that advocates for 'genital autonomy' for all persons, that is, irrespective of sex characteristics or gender. 21 Meanwhile, a string of high-profile court cases since 2015-spanning England, the USA and Australia-have been testing the limits of Western liberal tolerance 22 for medicalised religious practices involving children's genitalia.…”