Wichita State University, Department of Sociology, 1845 Fairmount Street, Wichita, KS, 67260, USA.
Soc Sci Med. 2024 Apr;346:116712. doi: 10.1016/j.socscimed.2024.116712. Epub 2024 Feb 22.
The process for developing clinical practice guidelines in medicine has changed dramatically over time. Previously, small groups of clinicians crafted clinical practice guidelines based on their professional expertise, but guideline developers must increasingly consider patients' lay expertise, global expertise, and principles of evidence-based medicine. This article analyzes how the World Professional Association for Transgender Health grappled with diverse forms of expertise and evidence-based medicine in the process of creating its "Standards of Care for the Health of Transgender and Gender Diverse People, Version 8" (hereafter, SOC-8), a prominent set of clinical practice guidelines in transgender medicine. Analysis is based on 83 interviews with clinicians, patients, and activists in the U.S. and Thailand between 2019 and 2021, as well as observation of transgender health conferences and content analysis of written materials. I find that despite the ostensible goal of incorporating more diverse expertise in this version of the guidelines, the SOC-8 ultimately reproduced traditional knowledge hierarchies in science and medicine in which the lay expertise of transgender and gender non-conforming patients and expertise from the Global South remain marginalized. I attribute this re-marginalization to the regulatory objectivity enacted in the SOC-8 revision process, which re-legitimized professional expertise, established no formal infrastructure for ensuring the equal participation of Global South stakeholders, and permitted limited inclusion of lay expertise from transgender and gender non-conforming people with relatively high levels of privilege (according to race, education, and other social statuses). These findings have implications for future research on knowledge hierarchies in science and medicine and the creation of clinical practice guidelines.
医学领域临床实践指南的制定过程随着时间的推移发生了巨大变化。以前,少数临床医生根据自己的专业知识制定临床实践指南,但指南制定者必须越来越多地考虑患者的非专业知识、全球知识和循证医学原则。本文分析了跨性别健康世界专业协会(World Professional Association for Transgender Health)在制定其“跨性别和性别多样化人群健康护理标准,第 8 版”(以下简称 SOC-8)的过程中,如何应对不同形式的专业知识和循证医学。分析的依据是 2019 年至 2021 年间在美国和泰国对 83 名临床医生、患者和活动人士进行的访谈,以及对跨性别健康会议的观察和对书面材料的内容分析。我发现,尽管指南的这一版本表面上旨在纳入更多不同的专业知识,但 SOC-8 最终还是复制了科学和医学中的传统知识层级体系,其中跨性别和性别不一致患者的非专业知识以及来自南方国家的知识仍然处于边缘地位。我将这种重新边缘化归因于 SOC-8 修订过程中实施的监管客观性,这种客观性使专业知识合法化,没有为确保南方国家利益相关者的平等参与建立正式的基础设施,并允许具有相对较高特权(根据种族、教育和其他社会地位)的跨性别和性别不一致人群的有限的非专业知识参与。这些发现对科学和医学中的知识层级体系以及临床实践指南的制定的未来研究具有重要意义。