Public Goods, Private Data: HIV and the History, Ethics, and Uses of Identifiable Public Health Information

Abstract

Public health departments collect a vast array of identifiable information in the course of mandatory reporting efforts and other surveillance activities. These undertakings span a range of conditions from infectious threats and chronic diseases including cancer, to immunization status and birth defects. This article examines key ethical questions regarding the uses of public health data and establishes a code of restraint for using identifiable data to achieve affirmative public health duties. The code of restraint suggests that: 1) The failure to use data for public health purposes, including research and direct interventions, must be justified; 2) Strict norms of privacy and confidentiality must govern the sharing of data and de-identified or anonymized data must be used whenever possible; 3) Releases must be done in a manner that minimizes and fairly distributes possible burdens resulting from them; 4) When releasing de-identified datasets, care must be taken to insure that individuals are unidentifiable; 5) Alternative pathways must be exhausted before it is justifiable to release an individual’s identifiable information; and 6) Only under exceptional circumstances is it acceptable to use identifiable public health information for non-health ends.