Action needed to address molecular HIV surveillance ethical concerns.

IF 2.9 4区 医学 Q2 PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH Canadian Journal of Public Health-Revue Canadienne De Sante Publique Pub Date : 2024-10-26 DOI:10.17269/s41997-024-00961-y
Alexander McClelland, Jason Brophy, Alexandra King, Maureen Owino, Amy Wah, Ryan Peck
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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.

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需要采取行动解决艾滋病毒分子监测的伦理问题。
人们对广泛使用与艾滋病毒有关的分子流行病学公共卫生监测和研究--或称艾滋病毒分子监测--的伦理问题日益关注。人们对这一做法的各种担忧源于缺乏知情同意、缺乏对社区的明显益处、病人护理关系可能受到侵蚀从而导致不良的健康结果,以及信息共享和研究结果的潜在影响,在艾滋病毒、毒品使用、性工作、移民和贫困被定为犯罪的情况下,这可能会增加污名化和其他负面影响。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,呼吁从批判和道德的角度关注分子艾滋病毒监测实践以及支撑这一实践的公共卫生逻辑。我们敦促加拿大的公共卫生参与者和研究人员在使用分子监测数据时注意全球指导和建议,采取符合文化背景的伦理做法,让社区成员参与艾滋病监测计划,并确保艾滋病感染者在使用二级数据分析时获得适当的同意程序。此外,我们还敦促研究人员和研究伦理委员会质疑在使用数据储存库中的个人健康信息时寻求后续同意不切实际的假设,并探索新的知情同意方法。
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来源期刊
Canadian Journal of Public Health-Revue Canadienne De Sante Publique
Canadian Journal of Public Health-Revue Canadienne De Sante Publique PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH-
CiteScore
6.10
自引率
4.70%
发文量
128
期刊介绍: The Canadian Journal of Public Health is dedicated to fostering excellence in public health research, scholarship, policy and practice. The aim of the Journal is to advance public health research and practice in Canada and around the world, thus contributing to the improvement of the health of populations and the reduction of health inequalities. CJPH publishes original research and scholarly articles submitted in either English or French that are relevant to population and public health. CJPH is an independent, peer-reviewed journal owned by the Canadian Public Health Association and published by Springer.   Énoncé de mission La Revue canadienne de santé publique se consacre à promouvoir l’excellence dans la recherche, les travaux d’érudition, les politiques et les pratiques de santé publique. Son but est de faire progresser la recherche et les pratiques de santé publique au Canada et dans le monde, contribuant ainsi à l’amélioration de la santé des populations et à la réduction des inégalités de santé. La RCSP publie des articles savants et des travaux inédits, soumis en anglais ou en français, qui sont d’intérêt pour la santé publique et des populations. La RCSP est une revue indépendante avec comité de lecture, propriété de l’Association canadienne de santé publique et publiée par Springer.
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