"I've had constant fears that I'll get cancer": the construction and experience of medical intervention on intersex bodies to reduce cancer risk.

Intersex variations cancer risk discourse analysis embodiment health care practitioners informed consent medical intervention qualitative research shame

Journal

International journal of qualitative studies on health and well-being
ISSN: 1748-2631
Titre abrégé: Int J Qual Stud Health Well-being
Pays: United States
ID NLM: 101256506

Informations de publication

Date de publication:
Dec 2024
Historique:
medline: 26 5 2024
pubmed: 26 5 2024
entrez: 26 5 2024
Statut: ppublish

Résumé

This paper examines the subjective experience of medical interventions on intersex bodies to reduce cancer risk. Twenty-five individuals with intersex variations took part in semi-structured interviews, analysed through thematic discourse analysis. Intersex bodies were positioned as inherently sick and in need of modification, with cancer risk legitimating surgical and hormonal intervention. This resulted in embodied shame, with negative impacts on fertility and sexual wellbeing. However, many participants resisted discourses of bio-pathologisation and embraced intersex status. Some medical interventions, such as HRT, were perceived to have increased the risk of cancer. Absence of informed consent, and lack of information about intersex status and the consequences of medical intervention, was positioned as a human rights violation. This was compounded by ongoing medical mismanagement, including health care professional lack of understanding of intersex variations, and the objectification or stigmatization of intersex people within healthcare. The consequence was non-disclosure of intersex status in health contexts and lack of trust in health care professionals. The legitimacy of poorly-evidenced cancer risk discourses to justify medical intervention on intersex bodies needs to be challenged. Healthcare practitioners need to be provided with education and training about cultural safety practices for working with intersex people.

Identifiants

pubmed: 38796859
doi: 10.1080/17482631.2024.2356924
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Pagination

2356924

Auteurs

Jane M Ussher (JM)

Translational Health Research Institute, School of Medicine, Western Sydney University, Penrith, Australia.

Morgan Carpenter (M)

Intersex Human Rights Australia, Sydney, Australia.
Faculty of Medicine and Health, Sydney Health Ethics, Sydney, Australia.

Rosalie Power (R)

Translational Health Research Institute, School of Medicine, Western Sydney University, Penrith, Australia.

Samantha Ryan (S)

Translational Health Research Institute, School of Medicine, Western Sydney University, Penrith, Australia.

Kimberley Allison (K)

Translational Health Research Institute, School of Medicine, Western Sydney University, Penrith, Australia.

Bonnie Hart (B)

School of Psychology and Counselling, Faculty of Health, Queensland University of Technology, Kelvin Grove, Brisbane, Australia.

Alexandra Hawkey (A)

Translational Health Research Institute, School of Medicine, Western Sydney University, Penrith, Australia.

Janette Perz (J)

Translational Health Research Institute, School of Medicine, Western Sydney University, Penrith, Australia.

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Classifications MeSH