Data Equity
Disappearing Data: Why We Must Stop Trump’s Attempts to Erase Our Communities
This collaborative op-ed comes from Caroline Medina, Director of Policy at The Institute for Health Research & Policy at Whitman-Walker, Naomi Goldberg, Executive Director at the Movement Advancement Project, and Meeta Anand, Senior Director, Census & Data Equity at The Leadership Conference on Civil and Human Rights.
Data are not just numbers — they represent real people, real experiences, and real disparities. Data tell the stories of our country. Data make visible communities who have long been stigmatized, discriminated against, and underserved in policymaking.
Over the last two weeks, the Trump administration has moved at breakneck pace to scrub websites, remove commonly used datasets like the Centers for Disease Control and Prevention (CDC) Youth Risk Behavior Surveillance Survey and AtlasPlus HIV surveillance tool, and eliminate resources from the U.S. Census Bureau and other agencies that document economic, social, and health disparities faced by millions of people. These efforts occurred as agencies rushed to comply with executive orders issued in the first weeks of the administration, despite ambiguity over the authority to suppress certain data.
For example, the administration seems to believe that taking down websites that mention transgender people, removing public health data on LGBTQ+ populations, and getting rid of information about collecting sexual orientation and gender identity means that transgender people will no longer exist. That’s not true: transgender and nonbinary people have existed throughout history and will continue to exist, despite the Trump administration’s attempts to exclude them from federal law and policies. But if federal surveys and data collections exclude these communities — and if federal research on these populations is halted and defunded — the ability to understand their needs and assess the impact of policy on their lives is profoundly diminished.
The CDC also recently stripped race and ethnicity data from tools like the Social Vulnerability Index and Environmental Justice Index. This administration seems to believe that if race and ethnicity are no longer part of these tools, the very real facts that economic well-being and access to clean air and water are still too often highly correlated with one’s race will similarly cease to be realities. What’s lost instead is the ability to measure how different communities are affected by public health crises and environmental hazards, to allocate resources effectively, and to design targeted interventions that can save lives from threats like communicable disease and environmental toxins.
Erasing data does not erase populations. It simply makes their experiences harder to measure and address through sound policymaking and ultimately exacerbates inequities. A quick look back in history shows the role of research and data in society. One of the first acts of the Nazi regime in Germany was the destruction of a sexual and gender research archive. Rigorous and ethical social science research has also been an important tool to help remedy harms throughout our country’s history, including school segregation, the exclusion of same-sex couples from marriage, and more.
This is not the first time the Trump administration has attempted to quash data collection. During Trump’s first term, he tried to roll back the inclusion of LGBTQ people in key government surveys like the American Community Survey and surveys focused on older adults. He halted the revision of Statistical Policy Directive 15, which governs how race and ethnicity are categorized in federal data. These strategies are designed to obscure disparities and silence the voices of underserved communities.
Data are inherently political because they reflect whose lives, experiences, and needs society values, shaping whose stories are heard, whose realities are acknowledged, and whose communities receive attention and resources. Removing these data sources helps to conceal disparities, making it easier for policymakers to justify inaction. The elimination of comprehensive demographic data collection — whether about race, ethnicity, sexual orientation, gender, or disability — is a deliberate attempt to suppress visibility and recognition of underserved communities. Data are supposed to serve all of us, not simply those deemed worthy of recognition by those in power.
These rollbacks do not merely threaten the integrity of scientific research — they undermine the fundamental goals of our federal statistical system to produce and share timely, relevant data while ensuring accuracy, credibility, objectivity, and confidentiality. Eliminating critical data allows for agencies to absolve themselves of accountability, obscures population-policy impacts, and worsens inequities. Missing data also undermine the ability of businesses to make decisions; market research is less reliable. AI systems that rely on data can’t perform effectively when relying on incomplete data. Without trusted data to make decisions, mistrust and disinformation can proliferate.
These datasets must be restored and made publicly available, and federal agencies must recommit to accessible, responsible, and inclusive data collection. Assurances must be made, especially in this environment, that scientific staff within federal agencies can continue collecting data using sound scientific approaches.
Ensuring the collection and protection of demographic data is not just about maintaining records; it is about affirming the visibility, rights, and well-being of the people behind those numbers. Scientific integrity and evidence-based policymaking must not be sacrificed for political expediency. Our communities deserve better — they exist in the real world, and our datasets should reflect that reality.
