Regulating Research Use of Information: Public, Private, or Something Else?

Abstract

This essay analyses how the concept of ‘privacy’ is construed in determining the U.S. regulatory approach to research involving human subjects. It begins by setting out how the federal policy for the protection of human research subjects - also known as the Common Rule - identifies privacy, showing how the Common Rule’s rendering of the concept is fundamentally incomplete. It then describes how modern technology has expanded the wealth of information that might be considered private, at the same time as it has moved further into the realm of what has been considered private, offering investigators new opportunities to look into various aspects of people’s lives. The essay then uses some key U.S. Supreme Court decisions turning on the idea of a right to privacy alleged to be embedded in the Constitution of the United States to illustrate how the concept has evolved in response to technological developments in the generation and transmission of information. Based on these considerations, I proceed to argue that classifying all information as either ’public’ or ‘private’ is inadequate, and that the regulated research community and the public at large should directly address the challenges of how to use information that is neither public nor private, but rather ‘restricted social information (RSI)’. This in turn implies that there is human behavior that is neither public nor private, which should be classified as ‘restricted access social behavior’ (RASB). And this affects the question of what is left of privacy, and how investigators should approach the investigation of what is truly private. I offer recommendations for regulatory revisions to the Common Rule, considering the views of some of the leading theorists about privacy.