Characterizing Privacy Perceptions and Risks in HIV Molecular Epidemiology

说明(申请人提供)：关于艾滋病毒在人群中传播(即传播网络)的研究表明，高度联系的个人(即由高度相关的艾滋病毒毒株指示假定的传播)在维持艾滋病毒流行传播率方面至关重要。与艾滋病毒复制相关的高突变率在感染者中提供了几乎唯一的艾滋病毒基因序列(即指纹等价物)，从而使人们有机会研究传播网络结构的模式。虽然分子流行病学数据被用来跟踪流行病过程和地理位置的变化，但它们很少(如果有的话)实时应用，以重新将预防和治疗干预的重点调整到离散的人群或人群中的集群。由于部分HIV-1 POL序列是为常规耐药性测试生成的，因此进行分子分析所需的数据很容易获得。与适当的流行病学数据相结合，网络分析可以用来确定与非法药物使用、耐药性、性传播感染、艾滋病毒感染接触地点和阶段相关的个人群体中新出现的流行病，这些都是治疗和预防干预的适当目标。尽管使用艾滋病毒基因数据研究疾病的实时网络传播并可能干预疾病的实时网络传播具有重大的公共卫生优势，但这些研究一直受到与假设披露两个或更多个人之间的潜在传播相关的隐私损失的担忧的限制。这种对两个或更多个人之间假定传播的披露代表了消费者和医疗保健提供者的担忧。不幸的是，没有量化这种风险的指标，也没有关于使用非宿主遗传学来 针对传染病流行的干预措施。在这一敏感领域缺乏指导方针限制了 艾滋病病毒分子流行病学研究进展。迫切需要基于不同利益攸关方的观点以及更好地定义和量化隐私风险限度的指导方针。我们的总体目标是确定利益相关者对隐私风险的看法，并减少艾滋病毒网络分析中隐私风险的不确定性。为了应对限制艾滋病毒传播的公共卫生潜力和最大限度地保护个人医疗隐私之间的冲突所带来的伦理挑战，我们提出了两个具体目标：1)评估对艾滋病毒传播网络分析的看法。以及2)表现出与传输网络分析相关的强可量化隐私。这项提案将是第一个开始为用于分子流行病学分析的艾滋病毒遗传数据制定风险-收益比率，以针对基于艾滋病毒传播网络的干预措施。这些分析的结果可作为今后讨论其他人类病原体暴发和传播的遗传学调查的基础。

DESCRIPTION (provided by applicant): Studies of HIV transmission within populations (i.e., transmission networks) have demonstrated the critical importance of highly connected individuals (i.e., defined by highly related HIV strains indicative of putative transmissions) in sustaining the rate of HIV epidemic spread. The high mutation rate associated with HIV replication provides a nearly unique HIV genetic sequence (i.e., a fingerprint equivalent) in infected individuals resulting in an opportunity to study patterns of transmission network structure. While molecular epidemiologic data are used to track changes in epidemic course and geography, they are rarely (if ever) applied in real time to refocus prevention and treatment interventions to discrete populations or clusters within a population. Because partial HIV-1 pol sequences are generated for routine drug resistance testing, the data necessary to perform molecular analyses are readily available. Paired with appropriate epidemiologic data, network analyses can be used to identify emerging epidemics within groups of individuals related by similar patterns of illicit substance use, drug resistance, sexually transmitted infection, venues f exposure and stage of HIV infection that are appropriate targets for treatment and prevention interventions. Despite the significant public health advantage to using HIV genetic data to study and potentially intervene on real-time network spread of disease, these studies have been limited by fears of loss of privacy related to hypothetical disclosure of potential transmission between two or more individuals. Such disclosure of putative transmission between two or more individuals represents a concern for both consumers and healthcare providers. Unfortunately, no metrics exist to quantify this risk, and no guidelines exist for the use of non-host genetics to target interventions for infectious epidemics. The lack of guidelines in this sensitive area limits progress and research in the molecular epidemiology of HIV. There is an urgent need for guidelines based on both perspectives of the diverse stakeholders and on better definition and quantification of the limits of privacy risk. Our overall goal is to characterize perceptions of privacy risk among stakeholders and reduce uncertainty regarding privacy risk in HIV network analysis. To address the ethical challenges highlighted by the conflict between the public health potential to limit HIV transmission and the need to maximally protect personal healthcare privacy, we propose two Specific Aims: 1) Assess perceptions regarding HIV transmission network analyses. and 2) demonstrate strong quantifiable privacy associated with transmission network analysis. This proposal will be the first to begin framing the risk-benefit ratio for the ue of HIV genetic data used for molecular epidemiologic analyses to target interventions based on HIV transmission networks. The outcomes of these analyses may serve as a foundation for future discussions of genetic investigations of outbreaks and spread of other human pathogens.