Dispelling the Myths Surrounding De-identification: Anonymization Remains a Strong Tool for Protecting Privacy

Dispelling the Myths Surrounding De-identification: Anonymization Remains a Strong Tool for Protecting Privacy

Introduction

Recently, the value of de-identification of personal information as a tool to protect privacy has come into question. Repeated claims have been made regarding the ease of re-identification. We consider this to be most unfortunate because it leaves the mistaken impression that there is no point in attempting to de-identify personal information, especially in cases where de-identified information would be sufficient for subsequent use, as in the case of health research.

The goal of this paper is to dispel this myth — the fear of re-identification is greatly overblown. As long as proper de-identification techniques, combined with re-identification risk measurement procedures, are used, de-identification remains a crucial tool in the protection of privacy. De-identification of personal data may be employed in a manner that simultaneously minimizes the risk of re-identification, while maintaining a high level of data quality. De-identification continues to be a valuable and effective mechanism for protecting personal information, and we urge its ongoing use.

In this paper we illustrate the importance of de-identifying personal information before it is used or disclosed, and at times, prior to its collection. We will demonstrate that, contrary to what has been suggested in recent articles, re-identification of properly de-identified information is not in fact an “easy” or “trivial” task. It requires concerted effort, on the part of skilled technicians. The paper will also describe a tool that minimizes the risk of the re-identification of de-identified information while also enabling a high level of data quality to be maintained. Our objective is to shatter the myth that de-identification is not a strong tool to protect privacy and to ensure that organizations that collect, use and disclose personal information understand the importance of de-identification for the protection of privacy, and continue to use this tool to the greatest extent possible to minimize potential risks. While our primary focus in this paper is on the value of de-identification in the context of personal health information that is used and disclosed for secondary purposes, the same arguments apply in the broader context of personal information.