Department of Epidemiology, University of Washington, Seattle, Washington, USA.
Fred Hutch, Office of HIV/AIDS Network Coordination, Seattle, Washington, USA.
J Int AIDS Soc. 2023 Jul;26 Suppl 1(Suppl 1):e26111. doi: 10.1002/jia2.26111.
The widespread implementation of molecular HIV surveillance (MHS) has resulted in an increased discussion about the ethical, human rights and public health implications of MHS. We narrate our process of pausing our research that uses data collected through MHS in response to these growing concerns and summarize the key lessons we learned through conversations with community members.
The original study aimed to describe HIV transmission patterns by age and race/ethnicity among men who have sex with men in King County, Washington, by applying probabilistic phylodynamic modelling methods to HIV-1 pol gene sequences collected through MHS. In September 2020, we paused the publication of this research to conduct community engagement: we held two public-facing online presentations, met with a national community coalition that included representatives of networks of people living with HIV, and invited two members of this coalition to provide feedback on our manuscript. During each of these meetings, we shared a brief presentation of our methods and findings and explicitly solicited feedback on the perceived public health benefit and potential harm of our analyses and results.
Some community concerns about MHS in public health practice also apply to research using MHS data, namely those related to informed consent, inference of transmission directionality and criminalization. Other critiques were specific to our research study and included feedback about the use of phylogenetic analyses to study assortativity by race/ethnicity and the importance of considering the broader context of stigma and structural racism. We ultimately decided the potential harms of publishing our study-perpetuating racialized stigma about men who have sex with men and eroding the trust between phylogenetics researchers and communities of people living with HIV-outweighed the potential benefits.
HIV phylogenetics research using data collected through MHS data is a powerful scientific technology with the potential to benefit and harm communities of people living with HIV. Addressing criminalization and including people living with HIV in decision-making processes have the potential to meaningfully address community concerns and strengthen the ethical justification for using MHS data in both research and public health practice. We close with specific opportunities for action and advocacy by researchers.
分子 HIV 监测（MHS）的广泛实施引发了关于 MHS 的伦理、人权和公共卫生影响的更多讨论。我们叙述了我们暂停使用通过 MHS 收集的数据进行研究的过程，以回应这些日益增长的担忧，并总结了我们通过与社区成员的对话获得的关键经验教训。
最初的研究旨在通过 MHS 收集的 HIV-1 pol 基因序列，应用概率系统发育建模方法，描述华盛顿金县男男性行为者中按年龄和种族/族裔划分的 HIV 传播模式。2020 年 9 月，我们暂停了这项研究的发表，以进行社区参与：我们举办了两次面向公众的在线演示，与包括艾滋病毒感染者网络代表在内的全国社区联盟会面，并邀请该联盟的两名成员就我们的手稿提供反馈。在每次会议中，我们简要介绍了我们的方法和发现，并明确征求了对我们分析和结果的感知公共卫生效益和潜在危害的反馈。
公众对 MHS 在公共卫生实践中的一些担忧也适用于使用 MHS 数据的研究，即与知情同意、推断传播方向性和刑事定罪有关的担忧。其他批评意见则具体针对我们的研究，包括对使用系统发育分析研究种族/族裔的聚类性以及考虑耻辱和结构性种族主义的更广泛背景的反馈。我们最终决定，发表我们的研究可能造成的危害——延续关于男男性行为者的种族化耻辱，并破坏系统发育研究人员与艾滋病毒感染者社区之间的信任——超过了潜在的益处。
使用通过 MHS 数据收集的 HIV 系统发育学研究是一种强大的科学技术，有可能使艾滋病毒感染者社区受益或受到伤害。解决刑事定罪问题并让艾滋病毒感染者参与决策过程，有可能解决社区的关切，并为在研究和公共卫生实践中使用 MHS 数据提供更有意义的伦理依据。我们最后提出了研究人员采取行动和宣传的具体机会。
