Surveillance: The Ethics of Public Health Reporting

监测：公共卫生报告的道德规范

• 批准号: 6748433
• 负责人: AMY L FAIRCHILD
• 金额: $ 35.79万
• 依托单位: COLUMBIA UNIVERSITY HEALTH SCIENCES
• 依托单位国家: 美国
• 财政年份: 2002
• 资助国家: 美国
• 起止时间: 2002-05-01 至 2005-04-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/6748433
• 关键词: clinical research; communicable disease control; communicable disease transmission; confidentiality; culture; data collection; emerging infectious disease; epidemiology; ethics; health science research; human subject; interview; politics; population survey; public health

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.

描述（由申请人提供）：该项目将解决广泛的问题 关于如何转移对隐私和机密性的理解的问题 反映在宪法，道德和社会规范中 了解和接受公共卫生监测。通过研究 传染病报告，疫苗注册机构，癌症注册机构， 职业健康报告，出生缺陷和模型状态 该项目将描述：1）宪法， 文化和政治力量塑造了监视的背景 报道引起了争议，以及冲突的解决方式； 2） 改变研究伦理规范的规范如何对监视进行讨论； 3） 联邦和州公共卫生当局之间的关系 建立监视制度以及如何竞争价值观和政治压力 影响监视的决定； 4）社会阶层的方式， 性别和种族影响监视； 5）那些有或有风险的人 特定的疾病对基于名称的病例监视的前景做出了反应； 6） 照顾有可报告状况的患者的医生如何 报告以及他们的态度如何按照程度 疾病受到污名化和患者的社会阶层； 7） 公共卫生官员采取的措施来保护 记录和这些努力随着时间而改变的方式 科学，政治，宪法和道德问题； 8） 流行病学与公共卫生监视与 流行病学研究伦理与伦理之间的关系 监视; 9）不断变化的技术如何改变辩论的性质。这 目标不是描述一系列情况，而是提供对 监视带来的核心道德挑战。该项目将告知 讨论公共卫生监视的道德规范，并为 制定对隐私和机密性敏感的公共政策 作为研究和公共卫生的需求。