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“我一直担心自己会得癌症”:为降低癌症风险而对两性畸形患者进行医学干预的构建和体验。

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

机构信息

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

Intersex Human Rights Australia, Sydney, Australia.

出版信息

Int J Qual Stud Health Well-being. 2024 Dec;19(1):2356924. doi: 10.1080/17482631.2024.2356924. Epub 2024 May 26.


DOI:10.1080/17482631.2024.2356924
PMID:38796859
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11134048/
Abstract

PURPOSE: This paper examines the subjective experience of medical interventions on intersex bodies to reduce cancer risk. METHODS: Twenty-five individuals with intersex variations took part in semi-structured interviews, analysed through thematic discourse analysis. RESULTS: 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. CONCLUSIONS: 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.

摘要

目的:本文探讨了医学干预对减少癌症风险的干预对间性人体的主观体验。

方法:25 名具有间性变异性的个体参与了半结构化访谈,通过主题话语分析进行了分析。

结果:间性体被定位为固有病态,需要进行修正,癌症风险使手术和激素干预合法化。这导致了身体羞耻感,对生育和性健康产生了负面影响。然而,许多参与者抵制了生物病理化的话语,并接受了间性状态。一些医疗干预措施,如激素替代疗法,被认为增加了癌症风险。缺乏知情同意,以及缺乏关于间性状态和医疗干预后果的信息,被认为是侵犯人权的行为。这因医疗管理不善而更加复杂,包括医疗保健专业人员对间性变异性缺乏了解,以及在医疗保健中对间性人的客体化或污名化。其结果是在健康环境中不披露间性状态,并且对医疗保健专业人员缺乏信任。

结论:需要挑战以证据不足的癌症风险话语为依据对间性体进行医学干预的合法性。医疗保健从业者需要接受有关与间性人合作的文化安全实践的教育和培训。

相似文献

[1]
"I've had constant fears that I'll get cancer": the construction and experience of medical intervention on intersex bodies to reduce cancer risk.

Int J Qual Stud Health Well-being. 2024-12

[2]
Health intervention experiences and associated mental health outcomes in a sample of LGBTQ people with intersex variations in Australia.

Cult Health Sex. 2023-7

[3]
Intersex people's perspectives on affirming healthcare practices: A qualitative study.

Soc Sci Med. 2023-7

[4]
Time matters for intersex bodies: Between socio-medical time and somatic time.

Soc Sci Med. 2018-5-8

[5]
Intersex Activists in Israel: Their Achievements and the Obstacles They Face.

J Bioeth Inq. 2018-9-7

[6]
Public understanding of intersex: an update on recent findings.

Int J Impot Res. 2023-2

[7]
LGBTQI Inclusive Cancer Care: A Discourse Analytic Study of Health Care Professional, Patient and Carer Perspectives.

Front Oncol. 2022-5-10

[8]
Negotiating Discourses of Shame, Secrecy, and Silence: Migrant and Refugee Women's Experiences of Sexual Embodiment.

Arch Sex Behav. 2017-10

[9]
The human rights of intersex people: addressing harmful practices and rhetoric of change.

Reprod Health Matters. 2016-5

[10]
Psychosocial approaches and discursive gaps in intersex healthcare: findings from an Israeli-German action research study.

Cult Health Sex. 2021-4

引用本文的文献

[1]
Sexual Embodiment and Sexual Renegotiation Post-Cancer for LGBTQ People with a Cervix.

Arch Sex Behav. 2025-3

[2]
"A sweating moment": impact of disclosure in cancer care on LGBTQI patient satisfaction.

J Cancer Surviv. 2024-9-21

[3]
Disrupted identities, invisibility and precarious support: a mixed methods study of LGBTQI adolescents and young adults with cancer.

BMC Public Health. 2023-9-21

[4]
Editorial: Cancer prevention, treatment and survivorship in the LGBTQIA community.

Front Oncol. 2023-7-11

本文引用的文献

[1]
"Queer people are excellent caregivers, but we're stretched so very thin": Psychosocial wellbeing and impacts of caregiving among LGBTQI cancer carers.

BMC Cancer. 2024-1-5

[2]
Disrupted identities, invisibility and precarious support: a mixed methods study of LGBTQI adolescents and young adults with cancer.

BMC Public Health. 2023-9-21

[3]
Almost invisible: A review of inclusion of LGBTQI people with cancer in online patient information resources.

Patient Educ Couns. 2023-9

[4]
Gonadal tumors in a contemporary cohort of patients with differences in sex development undergoing surgery - A multi-site study from the Pediatric Urologic Oncology Working Group of the societies for pediatric urology.

J Pediatr Urol. 2023-8

[5]
Reinforcing or Disrupting Gender Affirmation: The Impact of Cancer on Transgender Embodiment and Identity.

Arch Sex Behav. 2023-4

[6]
LGBTQI cancer patients' quality of life and distress: A comparison by gender, sexuality, age, cancer type and geographical remoteness.

Front Oncol. 2022-9-20

[7]
"Surviving Discrimination by Pulling Together": LGBTQI Cancer Patient and Carer Experiences of Minority Stress and Social Support.

Front Oncol. 2022-6-24

[8]
Babies born with ambiguous genitalia: Developing an educational resource for Australian midwives.

Women Birth. 2023-2

[9]
LGBTQI Inclusive Cancer Care: A Discourse Analytic Study of Health Care Professional, Patient and Carer Perspectives.

Front Oncol. 2022-5-10

[10]
Attitudes, knowledge and practice behaviours of oncology health care professionals towards lesbian, gay, bisexual, transgender, queer and intersex (LGBTQI) patients and their carers: A mixed-methods study.

Patient Educ Couns. 2022-7

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