From TB to HIV/AIDS to cancer, disease tracking has always had a political dimension, but it’s the foundation of public health

Tuberculosis was the leading cause of death in New York City and the U.S. overall in the late 19th century. Lewis Wickes Hine/Picryl, CC BY

Federal datasets began disappearing from public view on Jan. 31, 2025, in response to executive orders from President Donald Trump. Among those were the Centers for Disease Control and Prevention’s Youth Risk Behavior Survey, which asks respondents about their gender identity and sexual orientation and tracks behaviors like smoking and drug use; CDC’s HIV dataset; and CDC and Agency for Toxic Substances and Disease registry’s Environmental Justice Index, which tracks pollution in communities, and Social Vulnerability Index, which identifies communities at high risk for disease and disability.

The collection of public health surveillance data has never been politically neutral. It has always reflected ideas about individual rights. With our colleagues James Colgrove and Daniel Wolfe, we have written about the history and ethics of surveillance. Despite controversy, it remains public health’s foundational tool.