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参与性网络研究的正负社会后果。

Positive and Negative Social Consequences of Participating in a Sexual-Network Study.

机构信息

Researcher at The Ohio State University Center for HOPES.

Researcher at The Carter Center.

出版信息

Ethics Hum Res. 2024 Jan-Feb;46(1):14-25. doi: 10.1002/eahr.500196.

DOI:10.1002/eahr.500196
PMID:38240396
Abstract

Assessment of risks and benefits of study participation is standard practice preceding the initiation of human subjects research. Although tracking adverse events during research participation is routine, collecting information from participants about what they perceive as benefits is less common. We longitudinally tracked social risks and benefits of participation among a cohort of 241 men who have sex with men participating in a sexual health study to improve participants' experiences and enhance understanding of participant motivations to enroll and attend follow-up. Of the participants who returned for at least one follow-up visit (n = 217, 90%), most (n = 185, 85%) reported positive consequences resulting from participation. Reporting of negative social consequences was rare, and all concerned a stigmatized reaction from someone learning about the participant's involvement in a sexual health study. Better identification of both positive and negative consequences resulting from research participation may improve how researchers design, recruit, and conduct research.

摘要

评估研究参与的风险和益处是在开展人体研究之前的标准做法。虽然在研究参与期间跟踪不良事件是常规做法,但从参与者那里收集他们认为的益处的信息则不那么常见。我们对 241 名男男性行为者进行了一项性健康研究,以跟踪他们在参与过程中的社会风险和益处,从而改善参与者的体验,并增强对参与者参与和参加随访的动机的理解。在至少参加一次随访的参与者中(n=217,90%),大多数(n=185,85%)报告了参与带来的积极后果。很少有报告负面的社会后果,所有这些后果都涉及到有人得知参与者参与性健康研究而产生的污名化反应。更好地识别研究参与带来的积极和消极后果可能会改善研究人员的设计、招募和开展研究的方式。

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本文引用的文献

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Factors Associated With Syphilis Transmission and Acquisition Among Men Who Have Sex With Men: Protocol for a Multisite Egocentric Network Study.男男性行为者中梅毒传播与感染的相关因素:一项多中心自我中心网络研究方案
JMIR Res Protoc. 2022 Nov 4;11(11):e40095. doi: 10.2196/40095.
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Motivation to participate and experiences of the informed consent process for randomized clinical trials in emergency obstetric care in Uganda.乌干达产科急诊中随机临床试验的参与动机和知情同意过程体验。
BMC Med Ethics. 2021 Jul 28;22(1):104. doi: 10.1186/s12910-021-00672-w.
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A systematic review of stigma in sexual and gender minority health interventions.
性少数群体和性别少数群体健康干预措施中污名的系统评价。
Transl Behav Med. 2020 Oct 12;10(5):1200-1210. doi: 10.1093/tbm/ibz200.
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Social Impacts Among Participants in HIV Vaccine Trial Network (HVTN) Preventive HIV Vaccine Trials.艾滋病毒疫苗试验网络(HVTN)预防艾滋病毒疫苗试验参与者的社会影响。
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Reported Participation Benefits in International HIV Prevention Research with People Who Inject Drugs.在针对注射吸毒者的国际艾滋病毒预防研究中报告的参与益处。
Ethics Hum Res. 2019 Sep;41(5):28-34. doi: 10.1002/eahr.500030.
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The Health Stigma and Discrimination Framework: a global, crosscutting framework to inform research, intervention development, and policy on health-related stigmas.健康污名与歧视框架:一个全球性、跨领域的框架,旨在为与健康相关的污名化研究、干预措施制定和政策提供信息。
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Indirect Benefits in HIV Cure Clinical Research: A Qualitative Analysis.HIV治愈临床研究中的间接益处:一项定性分析
AIDS Res Hum Retroviruses. 2019 Jan;35(1):100-107. doi: 10.1089/AID.2017.0224. Epub 2018 Aug 22.
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Understanding motivations to participate in an observational research study: Why do patients enroll?理解参与观察性研究的动机:患者为何入组?
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Positive Social Impacts Related to Participation in an HIV Prevention Trial Involving People Who Inject Drugs.与参与涉及注射吸毒者的艾滋病毒预防试验相关的积极社会影响。
IRB. 2015 Jan-Feb;37(1):17-9.
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Altruism and participation in longitudinal health research? Insights from the Whitehall II Study.利他主义与参与纵向健康研究?来自白厅 II 研究的见解。
Soc Sci Med. 2012 Dec;75(12):2345-52. doi: 10.1016/j.socscimed.2012.09.006. Epub 2012 Sep 14.