The current privacy environment: implications for third-party research.

Abstract

A privacy revolution is under way. Public opinion survey data indicate that public concern about information privacy has reached all-time highs in recent years and shows little, if any, sign of abating. Public concern is the result of many factors, including evolving attitudes toward information, distrust of institutions, concerns about technology, and fear of harm, to name a few. Privacy also receives increasing amounts of media attention, often with adverse results for those organizations engaging in the scrutinized information practices. This public concern (and media attention) has prompted considerable legislative and regulatory activity at both the federal and state levels. New health information privacy rules promulgated by the Department of Health and Human Services pursuant to implement the Health Insurance Portability and Accountability Act of 1996, once implemented, for example, will affect large segments of the health care industry. Many types of medical research will be affected, possibly including some third-party research. This article begins with a brief overview, including a definition of privacy and an examination of the role of privacy in the American tradition. The article examines the current privacy environment as reflected through public opinion surveys about privacy, both broadly and in the medical research context specifically. Finally, the article examines recent and pending regulatory activity regarding health information privacy and the prospects for additional legislation or regulation.