Surveillance: The Ethics of Public Health Reporting

描述(由申请者提供)：该项目将涉及广泛的 问题是如何改变对隐私和保密的理解 反映在宪法、道德和社会规范上，影响了 对公共卫生监测的理解和接受程度。通过一项研究 传染病报告，疫苗登记，癌症登记， 职业健康报告、出生缺陷登记和示范州 公共卫生隐私法，该项目将描述：1)如何符合宪法， 文化和政治力量塑造了监视的背景，程度 报道引起了争议，以及冲突的解决方式；2) 不断变化的研究伦理规范如何影响有关监督的讨论；3) 年联邦和州公共卫生当局之间的关系 建立监督制度以及相互竞争的价值观和政治压力 影响有关监督的决定；4)社会阶层、 性别、种族对监测的影响；5)那些患有或面临艾滋病风险的人 特定疾病对基于名称的病例监测的前景作出反应；6) 护理有可报告病情的患者的医生如何看待 报道以及他们的态度是如何由 疾病被污名化，并被他们的病人的社会阶层所污蔑； 公共卫生官员采取的保密措施 记录以及这些努力随着时间的推移而发生变化的方式 科学、政治、宪法和伦理方面的关切；8) 流行病学与公共卫生监测的关系 流行病学研究的伦理学与艾滋病的伦理学的关系 监视；以及不断变化的技术如何改变了辩论的性质。这个 目标不是描述一系列案例，而是提供对 监控带来的核心道德挑战。该项目将通知 探讨公共卫生监督的伦理问题，为 制定对隐私和保密也有敏感认识的公共政策 作为研究和公共卫生的要求。

DESCRIPTION (provided by applicant): The project will address the broad question of how shifting understandings of privacy and confidentiality as reflected in constitutional, ethical, and social norms have affected the understanding and acceptability of public health surveillance. Through a study of infectious disease reporting, vaccine registries, cancer registries, occupational health reporting, birth defects registries, and the Model State Public Health Privacy Act, the project will describe: 1) how constitutional, cultural, and political forces shaped the context of surveillance, the extent to which reporting generated controversy, and the way conflict was resolved; 2) how changing norms of research ethics shaped discussions over surveillance; 3) the relationship between federal and state public health authorities in creating surveillance regimes and how competing values and political pressures affected decisions regarding surveillance; 4) the ways in which social class, gender, and race affected surveillance; 5) how those with or at risk for specific diseases responded to the prospect of name-based case surveillance; 6) how physicians who cared for patients with reportable conditions viewed reporting and how their attitudes were shaped by the extent to which the disease was stigmatized and by the social class of their patients; 7) the measures taken by public health officials to safeguard the confidentiality of records and the ways in which those efforts changed over time because of scientific, political, constitutional, and ethical concerns; 8) the relationship between epidemiology and public health surveillance and the relationship between the ethics of epidemiological research and the ethics of surveillance; and 9) how changing technology altered the nature of debates. The goal is not to describe a series of cases, but to provide an understanding of the core ethical challenges posed by surveillance. The project will inform discussion of the ethics of public health surveillance and contribute to the development of public policy sensitive to privacy and confidentiality as well as the demands of research and public health.