Aaron Samuel Breslow, Ellora Vilkin, Bria Brown-King, Elizabeth Cavic, Ginette Sims, Marla Renee Fisher, Kimberly Zieselman, Alesdair Ittelson
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引用次数: 0
Abstract
Background: An estimated 1.7% to 4% of people in the United States are born intersex, or with congenital variations that transcend binary sex. Historically, Western medical protocols have advocated for the 'correction' of intersex variations through early surgical intervention, a practice opposed by the majority of intersex-led organizations. Stakeholder voices remain under-represented in research.
Objectives: This study aimed to explore the experiences of intersex young adults participating in health research, with the goal of gathering recommendations to improve intersex-affirming research practices.
Methods: In collaboration with interACT: Advocates for Intersex Youth, a leading intersex rights organization, we conducted four focus groups between January and May 2022 with 11 intersex young adults. Participants were recruited via convenience sampling through interACT's mail listservs and purposively sampled for diversity in age, geographic location, race and ethnicity, and gender identity. Thematic analysis was used to analyze focus group transcripts.
Results: Three central subthemes emerged regarding participants' problems with intersex health research: dehumanization and objectification, stigmatizing language, and under-representation in research. Four subthemes emerged in terms of recommendations for intersex-affirming research: using community-based research approaches; focusing on strengths rather than pathology; conducting translational research that improves health care services; and prioritizing respondent experiences in study design.
Conclusions: This study emphasizes the negative experiences of intersex individuals with non-affirming research practices and underscores the need for more ethical, participatory, and humanizing research approaches. By centering intersex stakeholders, future research can better support the autonomy, wellbeing, and health equity of intersex communities.
背景：在美国，估计有1.7%到4%的人出生时是双性人，或者具有超越二元性别的先天性变异。从历史上看，西方医学协议主张通过早期手术干预来“纠正”双性人的变异，这一做法遭到大多数双性人领导的组织的反对。利益相关者的声音在研究中仍然没有得到充分的代表。目的：本研究旨在探讨青年双性人参与健康研究的经验，以收集改善双性人肯定研究实践的建议。方法：在2022年1月至5月期间，我们与领先的双性人权利组织interACT: Advocates for Intersex Youth合作，对11名双性青年进行了四个焦点小组的研究。参与者是通过interACT的邮件列表服务进行方便抽样招募的，并有目的地对年龄、地理位置、种族和民族以及性别认同的多样性进行抽样。专题分析用于分析焦点小组记录。结果：关于参与者在阴阳人健康研究中的问题，出现了三个中心子主题：非人化和物化、污名化语言和研究代表性不足。关于确认双性人研究的建议出现了四个次级主题：利用基于社区的研究方法；关注优点而不是缺点；开展改善卫生保健服务的转化研究；在研究设计中优先考虑被调查者的经历。结论：本研究通过非肯定性研究实践强调了双性人的负面经历，并强调了对更具伦理性、参与性和人性化研究方法的需求。通过以双性人利益相关者为中心，未来的研究可以更好地支持双性人社区的自治，福祉和健康公平。
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