Kate MacKay of the University of Sydney’s School of Public Health very kindly interviewed me as part of the Sydney Health Ethics Research Podcast series. I am a part-time PhD candidate at Sydney Health Ethics, and it was wonderful to be able to chat about my recent book chapter with Christopher Jordens, published in the book Interdisciplinary and Global Perspectives on Intersex.
We discussed the relationship between intersex advocacy and bioethics, and the role of human rights in determining the parameters for medical treatment.
Some links to cited works include:
Carpenter M., Jordens C.F.C. (2022) When Bioethics Fails: Intersex, Epistemic Injustice and Advocacy. In: Walker M. (eds) Interdisciplinary and Global Perspectives on Intersex. Palgrave Macmillan, Cham. https://doi.org/10.1007/978-3-030-91475-2_7 – a free preprint is also available
Australian Human Rights Commission. 2021. Ensuring Health and Bodily Integrity: Towards a Human Rights Approach for People Born with Variations in Sex Characteristics. Sydney, Australia: Australian Human Rights Commission. https://humanrights.gov.au/intersex-report-2021.
Hutson, John, Sonia Grover, Clare Delany, and Morgan Carpenter. 2020. ‘Intersexion: The Birth of Ambiguity’. Presented at the Melbourne Medical Student Conference 2020, University of Melbourne, June 23. https://morgancarpenter.com/mdscx-2020/.
Some additional resources include the following:
Hutson, John. 2020. ‘Short, Medium and Long-Term Outcomes for DSD at The Royal Children’s Hospital’. In Disorders|Differences of Sex Development: An Integrated Approach to Management, edited by John Hutson, Sonia R. Grover, Michele A. O’Connell, Aurore Bouty, and Chloe A. Hanna, 305–18. Singapore: Springer. https://doi.org/10.1007/978-981-13-7864-5_23. I argue that this research justifying early surgeries relies on old data, often on adolescents where long-term outcomes cannot be established. In my view it is also subject to confirmation bias, with clinicians studying their own patients in line with their own research goals.
Carpenter, Morgan. 2018. ‘The “Normalisation” of Intersex Bodies and “Othering” of Intersex Identities’. In The Legal Status of Intersex Persons, edited by Jens Scherpe, Anatol Dutta, and Tobias Helms, 445–514. Cambridge, England: Intersentia. https://doi.org/10.1017/9781780687704.028 – and free author copy.
And finally here are some relevant bioethics papers:
Rossiter, Katherine, and Shonna Diehl. 1998. ‘Gender Reassignment in Children: Ethical Conflicts in Surrogate Decision Making’. Pediatric Nursing 24 (1): 59.
Gillam, Lynn, Jacqueline Hewitt, and Garry Warne. 2010. ‘Ethical Principles for the Management of Infants with Disorders of Sex Development’. Hormone Research in Paediatrics 74 (6): 412–18. https://doi.org/10.1159/000316940.
Dreger, Alice, David E. Sandberg, and Ellen K. Feder. 2010. ‘From Principles to Process in Disorders of Sex Development Care’. Hormone Research in Paediatrics 74 (6): 419–20. https://doi.org/10.1159/000316943.
Behrens, Kevin G. 2020. ‘A Principled Ethical Approach to Intersex Paediatric Surgeries’. BMC Medical Ethics 21 (1): 108. https://doi.org/10.1186/s12910-020-00550-x.