Surveillance: The Ethics of Public Health Reporting

描述（由申请人提供）：该项目将解决广泛的 如何改变对隐私和保密的理解， 反映在宪法、道德和社会规范中， 公共卫生监督的理解和可接受性。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国家 公共卫生隐私法，该项目将描述：1）如何宪法， 文化和政治力量塑造了监视的背景， 报告产生争议的原因，以及解决冲突的方式; 2） 不断变化的研究伦理规范如何塑造了关于监督的讨论; 3） 联邦和州公共卫生当局之间的关系 建立监控制度，以及相互竞争的价值观和政治压力 影响有关监视的决定; 4）社会阶层， 性别和种族影响监测; 5）那些患有或有风险的人 特定疾病对基于名称的病例监测的前景有反应; 6） 照顾有可报告疾病患者的医生如何看待 报告，以及他们的态度是如何形成的程度， 疾病被污名化，并由他们的病人的社会阶层; 7） 公共卫生官员为保护 记录和这些努力随着时间的推移而改变的方式， 科学、政治、宪法和伦理问题; 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 监视;以及9）不断变化的技术如何改变辩论的性质。的 我的目的不是描述一系列的案例，而是提供一个理解， 监控带来的核心伦理挑战该项目将告知 讨论公共卫生监测的伦理并为公共卫生监测做出贡献 制定对隐私和保密敏感的公共政策， 作为研究和公共卫生的需求。

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.