McClelland Alexander, Brophy Jason, King Alexandra, Owino Maureen, Wah Amy, Peck Ryan
Institute of Criminology and Criminal Justice, Carleton University, Ottawa, ON, Canada.
Department of Pediatrics, Faculty of Medicine, University of Ottawa, Ottawa, ON, Canada.
Can J Public Health. 2025 Apr;116(2):265-271. doi: 10.17269/s41997-024-00961-y. Epub 2024 Oct 26.
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.
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。