Characterizing Privacy Perceptions and Risks in HIV Molecular Epidemiology

HIV 分子流行病学中的隐私认知和风险特征

• 批准号: 8789729
• 负责人: MICHAEL W KALICHMAN
• 金额: $ 19.38万
• 依托单位: UNIVERSITY OF CALIFORNIA, SAN DIEGO
• 依托单位国家: 美国
• 财政年份: 2014
• 资助国家: 美国
• 起止时间: 2014-06-01 至 2016-05-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8789729
• 关键词: AIDS prevention; Address; Adult; Alcohol or Other Drugs use; Anti-Retroviral Agents; Area; Biological Preservation; Caring; Characteristics; Communities; Confidential Information; Conflict (Psychology); Data; Disclosure; Disease; Disease Outbreaks; Drug resistance; Epidemic; Epidemiology; Ethics; Event; Excision; Fingerprint; Foundations; Fright; Future; Genetic; Geography; Goals; Guidelines; HIV; HIV Infections; HIV vaccine; HIV-1; Health; Health Benefit; Health Personnel; Healthcare; Human; Incidence; Individual; Infection; Intervention; Intervention Studies; Interview; Investigation; Lead; Legal; Maps; Measures; Medical; Metric; Modality; Molecular; Molecular Epidemiology; Mutation; Outcome; Participant; Pathway Analysis; Pattern; Perception; Persons; Phylogenetic Analysis; Population; Populations at Risk; Prevention; Prevention education; Preventive Intervention; Privacy; Property; Prophylactic treatment; Provider; Public Health; Research; Resources; Risk; Sexually Transmitted Diseases; Staging; Structure; Surveys; Testing; Time; Uncertainty; base; cost; epidemiologic data; high risk; pathogen; public health relevance; risk benefit ratio; risk perception; tool; transmission process; visual map

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.

描述（由申请人提供）：对人群内艾滋病毒传播（即传播网络）的研究表明，高度关联的个体（即由表明假定传播的高度相关的艾滋病毒毒株定义）对于维持艾滋病毒流行的传播速度至关重要。与 HIV 复制相关的高突变率在感染个体中提供了几乎独特的 HIV 基因序列（即指纹等效物），从而有机会研究传播网络结构的模式。虽然分子流行病学数据用于跟踪流行病过程和地理的变化，但很少（如果有的话）实时应用它们来将预防和治疗干预措施重新集中于离散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而生成的，因此可以轻松获得进行分子分析所需的数据。与适当的流行病学数据相结合，网络分析可用于识别与非法药物使用、耐药性、性传播感染、暴露场所和艾滋病毒感染阶段相似模式相关的个体群体中新出现的流行病，这些是治疗和预防干预措施的适当目标。尽管使用艾滋病毒遗传数据来研究并可能干预疾病的实时网络传播具有显着的公共卫生优势，但这些研究因担心因假设披露两个或更多个人之间的潜在传播而导致隐私丧失而受到限制。这种两个或多个人之间假定传播的披露引起了消费者和医疗保健提供者的担忧。不幸的是，没有任何指标可以量化这种风险，也没有使用非宿主遗传学的指南 针对传染病流行病采取有针对性的干预措施。这个敏感领域缺乏指导方针限制了 HIV分子流行病学的进展与研究.迫切需要基于不同利益相关者的观点以及更好地定义和量化隐私风险限制的指导方针。我们的总体目标是描述利益相关者对隐私风险的看法，并减少 HIV 网络分析中隐私风险的不确定性。为了解决限制艾滋病毒传播的公共卫生潜力与最大限度地保护个人医疗保健隐私的需要之间的冲突所凸显的伦理挑战，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。 2）展示与传输网络分析相关的强大的可量化隐私。该提案将是第一个开始制定用于分子流行病学分析的艾滋病毒遗传数据的风险效益比，以根据艾滋病毒传播网络进行有针对性的干预措施。这些分析的结果可以作为未来讨论其他人类病原体爆发和传播的基因调查的基础。