'Who is Helsinki?' Sex workers advise improving communication for good participatory practice in clinical trials
'Who is Helsinki?' Sex workers advise improving communication for good participatory practice in clinical trials
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DOI：
10.1093/her/cyq087
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发表时间：
2011-06-01
影响因子：
2.4
通讯作者：
Allman, Dan
中科院分区：
文献类型：
--
作者：
Ditmore, Melissa Hope;Allman, Dan
2004年，在非洲和亚洲性工作者参与的人体免疫缺陷病毒（艾滋病毒）生物医学预防试验过早结束后，联合国艾滋病毒/艾滋病联合规划署（艾滋病规划署）和全球预防艾滋病毒宣传组织进行了协商，为这类试验制定更好的参与性准则，以解决伦理问题。本研究调查了性工作者对研究伦理和良好参与实践（GPP）的知识和信念，以及性工作者对研究参与的看法。根据艾滋病规划署和亚非咨委会确定的标准，一项有33个问题的调查被翻译成另外三种语文。参与者是通过邮件列表和与现有性工作网络的联系招募的。共收到来自欧洲、美洲和亚洲的74份答复。30%的答复者报告直接参与了艾滋病毒生物医学预防试验。70%的人表示不熟悉研究的道德规范。这篇论文只关注调查回复中描述的沟通问题。沟通是一个重要的主题：试验参与者和研究人员之间缺乏明确的沟通，导致至少两个地点的试验过早结束。性工作者对研究人员如何通过改善沟通来实施GPP提出了建议，包括在计划开始时进行咨询，用非技术术语解释程序，以及为参与者建立清晰的反馈渠道。
After premature closures in 2004 of biomedical human immunodeficiency virus (HIV) prevention trials involving sex workers in Africa and Asia, the Joint United Nations Programme on HIV/AIDS (UNAIDS) and Global Advocacy for HIV Prevention (AVAC) undertook consultations to establish better participatory guidelines for such trials in order to address ethical concerns. This study investigated sex workers' knowledge and beliefs about research ethics and good participatory practices (GPP) and the perspectives of sex workers on research participation. A 33-question survey based on criteria identified by UNAIDS and AVAC was translated into three other languages. Participants were recruited through mailing lists and contacts with existing sex work networks. In total, 74 responses from Europe, the Americas and Asia were received. Thirty percent of respondents reported first-hand involvement in biomedical HIV prevention trials. Seventy percent indicated a lack of familiarity with codes of ethics for research. This paper focuses exclusively on communication issues described in survey responses. Communication was an important theme: the absence of clear communication between trial participants and investigators contributed to premature trial closures in at least two sites. Sex workers had recommendations for how researchers might implement GPP through improved communication, including consultation at the outset of planning, explaining procedures in non-technical terms and establishing clear channels for feedback from participants.