Privacy protectionism and health information: is there any redress for harms to health?

Abstract

Health information collected by governments can be a valuable resource for researchers seeking to improve diagnostics, treatments and public health outcomes. Responsible use requires close attention to privacy concerns and to the ethical acceptability of using personal health information without explicit consent. Less well appreciated are the legal and ethical issues that are implicated when privacy protection is extended to the point where the potential benefits to the public from research are lost. Balancing these issues is a delicate matter for data custodians. This article examines the legal, ethical and structural context in which data custodians make decisions about the release of data..