Data Control and Surveillance in the Global TB Response: A Human Rights Analysis

Abstract

The global response to the tuberculosis (TB) epidemic is generating copious amounts of personal health data. The emerging emphasis on the use of active case finding and digital adherence technologies in the TB response will increase the amount and expand the kind of data produced and used by public and private health officials. The production of personal data in high TB burden countries, in particular, must be considered in light of their colonial histories. In doing so, we argue that interventions to eliminate TB at global and national levels are ushering in a new era of data colonisation and surveillance in the name of public health. This, in turn, raises critical concerns for the human rights of people affected by TB, many of whom belong to vulnerable or marginalised groups. We examine the normative and legal content for a set of international human rights critical to the TB response, highlighting how each right implicates the production and use of personal health data. We also demonstrate that these rights are, by and large, enshrined in the constitutions of each high TB burden country. Finally, we use these rights to analyse active case finding and digital adherence technologies to pinpoint their unique data risks and the threats they pose to the human rights of people affected by TB.