Privacy at What Cost to Health Research? What Demographers Need to Know about the New Privacy Rule

Rose M. Li, Analytical Sciences, Inc.

Americans place a huge premium on the right to privacy, particularly about their health information, including genetic information. On the other hand, Americans expect and demand open access to information from the government. Demographers have been among the strongest advocates of data sharing, and have long recognized the multiplier effects from secondary data analysis of expensive data collection efforts. Unfortunately, legitimate concerns about privacy protection of health information has led to a set of rules that may have the unintended effect of discouraging scientific research. This paper introduces the Privacy requirements of the Health Insurance Portability and Accountability Act (HIPAA) in the context of broader trends. The specific objective is to provide an overview of the implications of HIPAA for the demographic research community, and to outline a series of helpful next steps.