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本文引用的文献

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Criminal Code reform of HIV non-disclosure is urgently needed: Social science perspectives on the harms of HIV criminalization in Canada.急需对《艾滋病毒不披露刑法》进行改革:加拿大艾滋病毒刑事定罪危害的社会科学观点。
Can J Public Health. 2024 Feb;115(1):8-14. doi: 10.17269/s41997-023-00843-9. Epub 2023 Dec 12.
2
Community Insights in Phylogenetic HIV Research: The CIPHR Project Protocol.社区在 HIV 系统进化研究中的参与:CIPHR 项目方案。
Glob Public Health. 2023 Jan;18(1):2269435. doi: 10.1080/17441692.2023.2269435. Epub 2023 Oct 18.
3
Toward Consent in Molecular HIV Surveillance?: Perspectives of Critical Stakeholders.迈向分子 HIV 监测中的同意?关键利益攸关方的观点。
AJOB Empir Bioeth. 2024;15(1):66-79. doi: 10.1080/23294515.2023.2262967. Epub 2024 Jan 24.
4
Lessons learned from community engagement regarding phylodynamic research with molecular HIV surveillance data.从社区参与中获得的关于利用分子 HIV 监测数据进行系统发育研究的经验教训。
J Int AIDS Soc. 2023 Jul;26 Suppl 1(Suppl 1):e26111. doi: 10.1002/jia2.26111.
5
Advancing Dialogue About Consent and Molecular HIV Surveillance in the United States: Four Proposals Following a Federal Advisory Panel's Call for Major Reforms.推进美国关于同意和分子 HIV 监测的对话:联邦咨询小组呼吁进行重大改革后的四项建议。
Milbank Q. 2023 Dec;101(4):1033-1046. doi: 10.1111/1468-0009.12663. Epub 2023 Jun 28.
6
Brief Report: Challenges in Obtaining the Informed Perspectives of Stakeholders Regarding HIV Molecular Epidemiology.简要报告:在获取利益相关者对 HIV 分子流行病学的知情观点方面面临的挑战。
J Acquir Immune Defic Syndr. 2023 Jun 1;93(2):87-91. doi: 10.1097/QAI.0000000000003179.
7
The Role of Phylogenetics in Unravelling Patterns of HIV Transmission towards Epidemic Control: The Quebec Experience (2002-2020).系统发生学在揭示 HIV 传播模式以实现疫情控制中的作用:魁北克的经验(2002-2020 年)。
Viruses. 2021 Aug 19;13(8):1643. doi: 10.3390/v13081643.
8
Intersections of Treatment, Surveillance, and Criminal Law Responses to HIV and COVID-19.针对艾滋病毒和新冠疫情的治疗、监测与刑法应对措施的交叉点。
Am J Public Health. 2021 Jul;111(7):1252-1254. doi: 10.2105/AJPH.2021.306236. Epub 2021 Jun 10.
9
Phylogenetic Clustering among Asylum Seekers with New HIV-1 Diagnoses in Montreal, QC, Canada.加拿大魁北克省蒙特利尔新诊断 HIV-1 的寻求庇护者中的系统发育聚类。
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Adding a Voice to the Unique Ethical Considerations in Molecular HIV Surveillance.为分子HIV监测中的独特伦理考量发声。
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需要采取行动解决分子HIV监测的伦理问题。

Action needed to address molecular HIV surveillance ethical concerns.

作者信息

McClelland Alexander, Brophy Jason, King Alexandra, Owino Maureen, Wah Amy, Peck Ryan

机构信息

Institute of Criminology and Criminal Justice, Carleton University, Ottawa, ON, Canada.

Department of Pediatrics, Faculty of Medicine, University of Ottawa, Ottawa, ON, Canada.

出版信息

Can J Public Health. 2025 Apr;116(2):265-271. doi: 10.17269/s41997-024-00961-y. Epub 2024 Oct 26.

DOI:10.17269/s41997-024-00961-y
PMID:39461927
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC12076990/
Abstract

There have been growing ethical concerns about the widespread use of HIV-related molecular epidemiological public health surveillance and research-or what has come to be known as molecular HIV surveillance. The varied concerns of the practice originate due to lack of informed consent, lack of demonstrated benefit for communities, potential for eroded patient care relationships leading to poor health outcomes, and potential implications for information sharing and findings which could increase stigmatization and other negative impacts in contexts where HIV, drug use, sex work, migration, and poverty are criminalized. As people living with HIV, lawyers, clinicians, and social scientists, we are part of the growing movement calling for critical and ethical attention to the practice of molecular HIV surveillance and the public health logic which underwrites the practice. We urge Canadian public health actors and researchers working with molecular surveillance data to heed global guidance and recommendations for culturally informed ethical practices, to engage community members in HIV surveillance programs, and to ensure that people living with HIV are provided appropriate consent processes for uses of secondary data analysis. Furthermore, we urge researchers and Research Ethics Boards to interrogate assumptions of impracticality in seeking subsequent consent to use persons' health information held in data repositories and explore new methods of informed consent.

摘要

对于与艾滋病毒相关的分子流行病学公共卫生监测和研究(即所谓的分子艾滋病毒监测)的广泛使用,伦理方面的担忧日益增加。这种做法引发了各种担忧,原因包括缺乏知情同意、未证明对社区有益、存在破坏医患关系导致健康状况不佳的可能性,以及在艾滋病毒、吸毒、性工作、移民和贫困被定罪的情况下,信息共享和研究结果可能会增加污名化及其他负面影响。作为艾滋病毒感染者、律师、临床医生和社会科学家,我们是日益壮大的运动的一部分,该运动呼吁对分子艾滋病毒监测的做法以及支持该做法的公共卫生逻辑给予批判性和符合伦理的关注。我们敦促加拿大从事分子监测数据工作的公共卫生行为者和研究人员遵循全球关于文化上知情的伦理实践的指导和建议,让社区成员参与艾滋病毒监测项目,并确保为艾滋病毒感染者提供使用二次数据分析的适当同意程序。此外,我们敦促研究人员和研究伦理委员会审视在寻求后续同意使用数据存储库中保存的个人健康信息时关于不切实际的假设,并探索新的知情同意方法。