When Bioethics Fails: Intersex, Epistemic Injustice and Advocacy

“I’ve had constant fears that I’ll get cancer”: the construction and experience of medical intervention on intersex bodies to reduce cancer risk

“…Other participants resisted self-positioning within bio-pathological cancer discourses, and questioned medical biopower, demonstrating agency and self-determination. These participants were drawing on discourses of resistance promulgated by intersex advocacy movements (Carpenter, 2016 , 2022a ; Monro et al, 2021 ), human rights critiques (Amnesty International, 2017 ; Human Rights Watch, 2017 ), and intersex researchers (Davis & Murphy, 2013 ; Monro et al, 2021 ), demonstrating the power of intersex activism (Feder, 2021 ).…”

“…An Australian Senate Committee which considered the evidence for cancer associated with intersex variations concluded that the complexity and diversity of cancer risk has been oversimplified, elevating the perceived or communicated risk, meaning that prophylactic surgery is often conducted unnecessarily (Senate Community Affairs Committee, 2013 ). Clinicians who reported to the committee conflated cancer risks with concerns about “sex of rearing” and “likelihood of gender dysphoria later in life” (Senate Community Affairs Committee, 2013 , p. 87), demonstrating that their decisions are mediated by socially determined concepts of gendered normality and abnormality (Carpenter, 2018b , 2022a ). The Senate Report concluded that “clinical intervention pathways stated to be based on probabilities of cancer risk may be encapsulating treatment decisions based on other factors, such as the desire to conduct normalising surgery” ( 2013 , p. 88).…”

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

“…The authors note that the 'European Society of Pediatric Urology has formally objected to human rights criticism' and what they saw as a failure to capture positive perspectives, to justify continuing pre-existing practices with parental consent. 38 Reformist perspectives in bioethics can also be seen in a history of interdisciplinary work by Karkazis, 82 Holmes, 83 Feder, 84 Elizabeth Reis, 85 myself, 86 and others. These are typically grounded in either personal lived experience or engagement with adults with lived experience.…”

“…It happens when bioethics achieves outcomes that disregard fundamental human rights norms-and it should happen in these situations. 86…”

“…Reformist perspectives in bioethics can also be seen in a history of interdisciplinary work by Karkazis, 82 Holmes, 83 Feder, 84 Elizabeth Reis, 85 myself, 86 and others. These are typically grounded in either personal lived experience or engagement with adults with lived experience.…”