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Expert Meeting on Privacy, Confidentiality, and Other Legal and Ethical Issues in Syndromic Surveillance


For syndromic and related public health surveillance systems to be effective, state and local health departments and the Centers for Disease Control and Prevention (CDC) need access to a variety of types of health data. Since the development and implementation of syndromic surveillance systems in recent years, health departments have gained varied levels of access to personal health information for inclusion in these systems. A variety of federal, state, and local laws enable, restrict, and otherwise infl uence the sharing of health information between health care providers and public health agencies for surveillance, as well as research, purposes. Some health care providers have expressed reluctance or refused to provide identifi able data for syndromic surveillance to health departments (1), citing state privacy laws or the Health Insurance Portability and Accountability Act of 1996 (HIPAA) Privacy Rule (2). Although the HIPAA Privacy Rule permits health care providers to disclose protected health information without patients’ consent to public health agencies for authorized purposes, it does not supersede state laws that provide greater protection of individual privacy (2,3). The use of individuals’ health information for syndromic surveillance poses challenging questions regarding the interpretation and future development of ethical and legal standards for public health practice and research. While the practice of syndromic surveillance extends the longstanding tradition of public health surveillance as an essential element of public health practice (4), it raises in a new light equally longstanding questions about governments’ authority to collect and use health information (5). As the practice of syndromic surveillance evolves, it is in the national interest to clarify the conditions under which health information can be shared, the ways that privacy and confi dentiality can be protected, and the ways that local, state, and federal public health agencies can legally, ethically, and effectively exercise their respective responsibilities to detect, monitor, and respond to public health threats.


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