110 Iowa L. Rev. 1139 (2025)
Abstract
Public health datasets will often tell us nothing about Indigenous people. This type of data suppression has been described as data genocide and data terrorism, because it demonstrates the effort to erase Indigenous people. Even when data is available, Tribes and their partners are regularly denied access to public health data from other jurisdictions. The seemingly simple call for more accurate, comprehensive public health data regarding Indigenous communities butts up against complicated issues. Who is considered Native and thus captured in Indigenous data? Why is Indigenous data regularly excluded from datasets? Who gets access to Indigenous data? These questions implicate federal Indian law, colonization, and Tribal sovereignty. So, while better quality data and improved data access are important goals, there is no way to bifurcate the need for public health data with the systematic racism embedded into the laws that impact the analyzing, collecting, and disseminating of this data. This Article aims to outline how Indigeneity interfaces with public health surveillance systems, in the context of both the collection of accurate data and the access to such data. It summarizes existing law and policy that define “Indian” under various frameworks and explores the challenges and limitations of defining Indian, particularly for the purposes of public health surveillance. This Article ends with a series of considerations regarding public health surveillance reform to better support Indian country.