The success of the health care system depends on the accuracy, correctness and trustworthiness of the information, and the privacy rights of individuals to control the disclosure of personal information. All participants in health care system (consumers and patients, health plans, and health care providers) need access to high quality information for informed decision making. At the same time, everyone must have confidence that information of a private nature is adequately protected.
Western society places a high value on individual rights, autonomous decision making, and the protection of the private sphere from governmental or other intrusion. The public believes that privacy rights are not adequately protected in the health care setting. Public fear and distrust of both technology and bureaucracy is likely to increase as collection, storage, and dissemination of information becomes even more automated.
Professor Gostin will discuss the privacy implications of a health care information infrastructure. He will discuss: (i) the automation of health information; (ii) health security ("smart") cards; (iii) unique identifiers (particularly social security numbers); (iv) patient-based longitudinal health records which record in electronic form a pre-birth to post-death account of a persons intimate health status; and health databases including genetic databases and registries for specific purposes (e.g., immunization) and diseases (e.g., cancer and HIV/AIDS).
Professor Gostin will also discuss the ethical and legal principles undergirding health information privacy. He will examine the trade-offs between the aggregate good derived from health information and the invasion of individual privacy.
Finally, Professor Gostin will suggest proposals for law reform based on the views of the Task Force on Health Information Privacy, a project chaired by Professor Gostin and supported by the Centers for Disease Control and Prevention. For the Model Public Health Information Privacy Act drafted as part of this CDC project, see