Department of Biomedical Informatics, The Ohio State University College of Medicine, 1800 Cannon Drive, Columbus, OH, 43016, USA.
Berman Institute of Bioethics, Johns Hopkins University, Baltimore, MD, USA.
BMC Public Health. 2024 May 29;24(1):1436. doi: 10.1186/s12889-024-18881-4.
HIV molecular epidemiology (HIV ME) can support the early detection of emerging clusters of new HIV infections by combining HIV sequence data routinely obtained during the clinical treatment of people living with HIV with behavioral, geographic, and sociodemographic information. While information about emerging clusters promises to facilitate HIV prevention and treatment efforts, the use of this data also raises several ethical concerns. We sought to assess how those working on the frontlines of HIV ME, specifically public health practitioners (PHPs) and researchers, prioritized these issues.
Ethical issues were identified through literature review, qualitative in-depth interviews, and stakeholder engagement. PHPs and researchers using HIV ME prioritized the issues using best-worst scaling (BWS). A balanced incomplete block design was used to generate 11 choice tasks each consisting of a sub-set of 5 ethical concerns. In each task, respondents were asked to assess the most and least concerning issue. Data were analyzed using conditional logit, with a Swait-Louviere test of poolability. Latent class analysis was then used to explore preference heterogeneity.
In total, 57 respondents completed the BWS experiment May-June 2023 with the Swait-Louviere test indicating that researchers and PHPs could be pooled (p = 0.512). Latent class analysis identified two classes, those highlighting "Harms" (n = 29) (prioritizing concerns about potential risk of legal prosecution, individual harm, and group stigma) and those highlighting "Utility" (n = 28) (prioritizing concerns about limited evidence, resource allocation, non-disclosure of data use for HIV ME, and the potential to infer the directionality of HIV transmission). There were no differences in the characteristics of members across classes.
The ethical issues of HIV ME vary in importance among stakeholders, reflecting different perspectives on the potential impact and usefulness of the data. Knowing these differences exist can directly inform the focus of future deliberations about the policies and practices of HIV ME in the United States.
HIV 分子流行病学（HIV ME）可以通过将在 HIV 感染者临床治疗过程中常规获得的 HIV 序列数据与行为、地理和社会人口统计学信息相结合，支持对新 HIV 感染的新集群的早期发现。虽然有关新集群的信息有望促进 HIV 的预防和治疗工作，但使用这些数据也引发了一些伦理问题。我们试图评估那些从事 HIV ME 一线工作的人，特别是公共卫生从业人员（PHPs）和研究人员，如何优先考虑这些问题。
通过文献回顾、定性深入访谈和利益相关者参与，确定了伦理问题。PHPs 和使用 HIV ME 的研究人员使用最佳最差评分（BWS）对这些问题进行了优先排序。使用不平衡不完全块设计生成了 11 个选择任务，每个任务都由 5 个伦理问题的子集组成。在每个任务中，要求受访者评估最令人关注和最不令人关注的问题。使用条件逻辑回归分析数据，并进行 Swait-Louviere 可汇集性检验。然后使用潜在类别分析来探索偏好异质性。
共有 57 名受访者于 2023 年 5 月至 6 月完成了 BWS 实验，Swait-Louviere 检验表明研究人员和 PHPs 可以汇集（p=0.512）。潜在类别分析确定了两个类别，突出“危害”（n=29）（优先考虑潜在的法律起诉风险、个人伤害和群体耻辱感的担忧）和突出“效用”（n=28）（优先考虑有限证据、资源分配、不披露 HIV ME 数据的使用以及推断 HIV 传播方向的可能性的担忧）。类别的成员特征没有差异。
HIV ME 的伦理问题在利益相关者中的重要性不同，反映了对数据潜在影响和有用性的不同看法。了解这些差异的存在，可以直接为未来关于美国 HIV ME 的政策和实践的审议重点提供信息。
