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“说方言”:理解 HIV 疫苗试验关闭后的公众话语

"Speaking the dialect": understanding public discourse in the aftermath of an HIV vaccine trial shutdown.

机构信息

Factor-Inwentash Faculty of Social Work, University of Toronto, ON, Canada.

出版信息

Am J Public Health. 2011 Sep;101(9):1749-58. doi: 10.2105/AJPH.2011.300208. Epub 2011 Jul 21.

DOI:10.2105/AJPH.2011.300208
PMID:21778490
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC3154228/
Abstract

OBJECTIVES

We investigated how persons from key populations at higher risk of HIV exposure interpreted the process and outcomes of the Step Study HIV-1 vaccine trial, which was terminated early, and implications for willingness to participate in and community support for HIV vaccine research.

METHODS

We used qualitative methods and a community-based approach in 9 focus groups (n = 72) among ethnically and sexually diverse populations and 6 semistructured key informant interviews in Ontario, Canada, in 2007 to 2008.

RESULTS

Participants construed social meaning from complex clinical and biomedical phenomena. Social representations and mental models emerged in fears of vaccine-induced infection, conceptualizations of unfair recruitment practices and increased risk behaviors among trial participants, and questioning of informed consent. Narratives of altruism and the common good demonstrated support for future trials.

CONCLUSIONS

Public discourse on HIV vaccine trials is a productive means of interpreting complex clinical trial processes and outcomes in the context of existing beliefs and experiences regarding HIV vaccines, medical research, and historical disenfranchisement. Strategic engagement with social representations and mental models may promote meaningful community involvement in biomedical HIV prevention research.

摘要

目的

我们调查了具有较高 HIV 暴露风险的重点人群如何理解 Step 研究 HIV-1 疫苗试验的过程和结果,该试验提前终止,并探讨了这对参与 HIV 疫苗研究的意愿和社区支持的影响。

方法

2007 年至 2008 年,我们在加拿大安大略省使用定性方法和基于社区的方法,在 9 个焦点小组(n = 72)中纳入了不同种族和性别的人群,以及 6 次半结构化的关键知情人访谈。

结果

参与者从复杂的临床和生物医学现象中构建了社会意义。社会代表性和心理模型出现在对疫苗引起感染的恐惧、对试验参与者不公平招募实践和增加的风险行为的概念化,以及对知情同意的质疑中。利他主义和共同利益的叙述表明支持未来的试验。

结论

HIV 疫苗试验的公众讨论是一种富有成效的方法,可以在现有的 HIV 疫苗、医学研究和历史上被剥夺权利的信念和经验背景下,解释复杂的临床试验过程和结果。与社会代表性和心理模型进行策略性接触,可能会促进社区在生物医学 HIV 预防研究方面的有意义参与。

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