University of California Irvine.
Centre for Social Research in Health, UNSW Sydney.
Am J Bioeth. 2020 Oct;20(10):10-23. doi: 10.1080/15265161.2020.1806373.
In the United States, clinical HIV data reported to surveillance systems operated by jurisdictional departments of public health are re-used for epidemiology and prevention. In 2018, all jurisdictions began using HIV genetic sequence data from clinical drug resistance tests to identify people living with HIV in "clusters" of others with genetically similar strains. This is called "molecular HIV surveillance" (MHS). In 2019, "cluster detection and response" (CDR) programs that re-use MHS data became the "fourth pillar" of the national HIV strategy. Public health re-uses of HIV data are done without consent and are a source of concern among stakeholders. This article presents three cases that illuminate bioethical challenges associated with re-uses of clinical HIV data for public health. We focus on evidence-base, risk-benefit ratio, determining directionality of HIV transmission, consent, and ethical re-use. The conclusion offers strategies for "HIV data justice." The essay contributes to a "bioethics of the oppressed."
在美国,向公共卫生管辖部门运营的监测系统报告的临床艾滋病毒数据被重新用于流行病学和预防。2018 年,所有辖区开始使用临床耐药性检测中的艾滋病毒基因序列数据,以确定与遗传相似菌株的其他人的“群体”中携带艾滋病毒的人。这被称为“分子 HIV 监测”(MHS)。2019 年,重新使用 MHS 数据的“集群检测和应对”(CDR)计划成为国家 HIV 战略的“第四支柱”。公共卫生部门对 HIV 数据的重新使用是在未经同意的情况下进行的,这是利益相关者关注的一个问题。本文提出了三个案例,阐明了重新使用临床 HIV 数据进行公共卫生的生物伦理挑战。我们关注的是证据基础、风险-效益比、确定 HIV 传播的方向性、同意和伦理再利用。结论提供了“HIV 数据正义”的策略。这篇文章为“受压迫者的生物伦理学”做出了贡献。