The Case of the Missing US Data

Summary

Podcast Summary: "The Case of the Missing US Data"

Podcast: More or Less: Behind the Stats
Host: Tim Harford (BBC Radio 4)
Date: September 27, 2025

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Overview

In this episode, Tim Harford and the More or Less team investigate the mysterious disappearance and alteration of thousands of US government data sets in early 2025. Joined by data experts Maggie Levenstein and John Cubali, they explore the execution, motivations, and real-world consequences of government actions that have rendered key public data sets unavailable or unreliable. The episode examines how political, budgetary, and ideological forces can jeopardize not only transparency but public wellbeing and research.

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Key Discussion Points and Insights

1. Sudden Disappearance of US Data Sets

• Timestamps: 01:07–02:41
  • In February 2025, thousands of US government web pages and data sets—from agencies like the CDC, NIH, and Census Bureau—became abruptly inaccessible.
  • Many sites went completely offline due to executive orders.
  • Notable Quote (01:31):
    Maggie Levenstein: “Lots and lots of data sets disappeared from access because entire websites for agencies of the government came down because of executive orders from the president questioning what could be made available.”

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2. Political and Ideological Motivations

• Timestamps: 02:41–03:48
  • Executive orders early in President Trump's second term targeted diversity, equity, inclusion, and climate change content on government websites.
  • To avoid non-compliance, agencies removed vital content wholesale, not just targeted language.
  • Budget cuts and mass firings compounded data inaccessibility as data producers and gatekeepers lost their jobs.
  • Notable Quote (03:29):
    Maggie Levenstein: “Lots and lots of people were fired. And those people are often people who produce data or people who provide access to data. And without those people in place, access was impossible.”

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3. Alteration and Discontinuation of Data Sets

• Timestamps: 03:48–04:28
  • While many web pages and data sets returned, some were changed or had sensitive sections removed.
  • Topics hit hardest: gender identity, vaccines, sexual behavior, and climate information.
  • Notable Quote (04:03):
    Maggie Levenstein: “There were actual decisions...to alter them to obscure information about gender identity or about vaccines or about sexual behavior or about climate... those data were removed or were altered.”

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4. Real-life Consequences

• Timestamps: 04:28–05:19
  • Loss of data, such as non-binary gender statistics, has direct social and health policy consequences.
  • Without such data, it’s difficult to identify and support at-risk populations.
  • Notable Quote (04:55):
    Maggie Levenstein: “When we don't have that information, it's much harder to provide the resources that people need to live full and healthy lives.”

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5. Budget Cuts and Data Quality

• Timestamps: 05:19–05:56
  • Budget cuts forced agencies like the Bureau of Labor Statistics to scale back data collection, reducing the reliability of economic indicators.
  • Business and policy leaders are now often “flying blind.”
  • Notable Quote (05:36):
    Maggie Levenstein: “When we reduce spending and the resources that the BLS has, that we get lower quality measures. And as a result, businesses are kind of much more likely to be flying blind.”

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6. Government Disclaimers and Misinformation

• Timestamps: 05:56–06:38
  • Many reactivated government websites now carry mandated disclaimers casting doubt on the accuracy of specific data, especially regarding sex and gender.
  • Example: CDC’s HIV surveillance page now asserts only two biological sexes.
  • Notable Quote (06:13):
    Maggie Levenstein: “Any information on this page promoting gender ideology is extremely inaccurate and disconnected from the immutable biological reality that there are two sexes, male and female.”

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7. Uncertainty Around Critical Data Programs: The PRAMS Case

• Timestamps: 06:38–09:11
  • PRAMS (Pregnancy Risk Assessment Monitoring System): vital for maternal and child health, now in jeopardy.
  • Researchers like John Cubali have had data requests ignored; recent data (post-2016) unavailable.
  • Uncertainty about whether PRAMS data is still even being collected after staff terminations.
  • Notable Quote (07:35):
    John Cubali: “It's something that is used both by policymakers and by researchers really to understand how are different aspects of maternal and child health changing over time and what populations are most impacted.”
  • Memorable Moment (08:39):
    John Cubali: “April 1, the entire prams office was essentially fired. And so now it's really uncertain what this means for this data collection moving forward.”

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8. Efforts to Preserve and Recover Data

• Timestamps: 09:11–09:44
  • Academics and data consortia scramble to save and verify what they can, but much data is irretrievably lost, altered, or missing crucial context.
  • Metadata and historical integrity compromised.
  • Notable Quote (09:23):
    Maggie Levenstein: “So there's some data that you can't get to at all. There's some data that we don't know is gone yet. There's also data that's been preserved, but we don't know for sure that it hasn't been changed. And you also don't have the context, what we call metadata...”

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Notable Quotes and Memorable Moments

• Maggie Levenstein (02:20): “Lots and lots of data sets disappeared from access because entire websites for agencies of the government came down because of executive orders from the president...”
• Tim Harford (04:28): “Some might see the eradication of the non binary gender category as purely a symbolic move. But we know that teenagers who identify as non binary more likely to be more vulnerable to certain risks than their peers.”
• John Cubali (08:13): “I started getting contacted by researchers and essentially these requests were just going unanswered. I submitted multiple requests myself... if you did not have access to that already, you're kind of out of luck at this point.”
• Maggie Levenstein (09:23): “There's some data that you can't get to at all. There's some data that we don't know is gone yet...”

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Conclusion

The episode closes on a sober note, highlighting how the case of the missing US data is far from resolved. Data loss and alteration undermine not just academic research and policy analysis, but the ability to provide targeted support to vulnerable populations. Both the cause and effect of political disruption, the erasure of data represents a fundamental challenge to evidence-based governance.

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If you have questions or input, contact the More or Less team at moreorlessbc.com.

Transcript

[Tim Harford]

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[Tim Harford]

Hello and thanks for downloading the More or less Podcast with A program that delves into data, steeps itself in statistics and mulls over mathematical mysteries and I'm Tim Harford. In early February 2020, something strange started happening across US government websites.

[Maggie Levenstein]

Error.

[Tim Harford]

Decades of data began disappearing from webpages for agencies such as the Centers for Disease Control and Prevention, the National Institutes of Health, and the Census Bureau. In many cases, the entire website went dark. Within a few days. Some 8,000 government pages and 3,000 data sets had been taken down. Since then, many have been reinstated, but some have not. A curious case indeed. As data sleuths, we have questions. Why was this data taken away? And why does any of it matter? Let us delve into the case of the missing US Data.

[Maggie Levenstein]

Lots and lots of data sets disappeared from access because entire websites for agencies of the government came down because of executive orders from the president questioning what could be made available. I'm Maggie Levenstein. I'm a professor at the University of Michigan and director of icpsr, the data consortium that's based here.

[Tim Harford]

At the start of President Trump's second term, he signed a flurry of executive orders, for example, eradicating measures promoting diversity, equality and inclusion in federal government. The order targeted websites over language about minorities, indigenous peoples, race, gender, sexuality and disability. Climate change was another banned topic because.

[Maggie Levenstein]

Agencies weren't sure that their websites would be consistent with the policies. They just brought the entire websites down, and that meant that data that had been collected and was accessed through those websites became inaccessible.

[Tim Harford]

While this was happening, the Department of Government Efficiency was plowing on with their goal of cutting $2 trillion from government spending. They haven't got anywhere close to those savings.

[Maggie Levenstein]

By the way, lots and lots of people were fired. And those people are often people who produce data or people who provide access to data. And without those people in place, access was impossible. And there also were budget cuts that were affecting data access and data collection going forward.

[Tim Harford]

Now, most of the government websites did eventually reappear. Some data sets were fully restored, but some data sets were discontinued and some reappeared. Although researchers soon noticed they'd been changed.

[Maggie Levenstein]

There were actual decisions for particular data sets to alter them to obscure information about gender identity or about vaccines or about sexual behavior or about climate, that those were policy areas where there's a lot that the administration didn't want people to have access to that data about those questions. And so those data were removed or were altered.

[Tim Harford]

When data goes missing or is altered, it can have very real life consequences. For example, some might see the eradication of the non binary gender category as purely a symbolic move. But we know that teenagers who identify as non binary more likely to be more vulnerable to certain risks than their peers. That's something we couldn't have known without collecting the data in the past. And without the data now, are we.

[Maggie Levenstein]

Providing the appropriate social supports to them? It's very hard to know without the data that was being collected about the mental health of young people and their gender identity and their risk and their sexual behaviors. When we don't have that information, it's much harder to provide the resources that people need to live full and healthy lives.

[Tim Harford]

The data at risk spans all areas of life and society. Recently, the Bureau of Labor Statistics announced that when calculating cpi, the consumer prices index, they would stop collecting the data from three cities due to budgetary cuts.

[Maggie Levenstein]

Businesses rely on these and they rely on them to be high quality measures. When we reduce spending and the resources that the BLS has, that we get lower quality measures. And as a result, businesses are kind of much more likely to be flying blind.

[Tim Harford]

Many websites also now have government mandated disclaimers on their homepage throwing doubt on the data. For example, if you go on the cdc, the center for Disease Control and Prevention's homepage for national HIV surveillance systems, you're met with this.

[Maggie Levenstein]

Per a court order, HHS is required to restore this website as of 11:59pm Eastern Time, February 11, 2025. Any information on this page promoting gender ideology is extremely inaccurate and disconnected from the immutable biological reality that there are two sexes, male and female.

[Tim Harford]

The fate of other data Sets is uncertain. For example, a decades old dataset that monitors birth outcomes in the us. Prams.

[John Cubali]

Prams, or the Pregnancy Risk Assessment Monitoring System, is kind of the gold standard for assessing and monitoring maternal and child health in the us. That's an area where the US has consistently lagged behind other high income countries.

[Tim Harford]

That's John Cubali, a research assistant professor at the University of Michigan who specialises in epidemiology. The Department of Health and Human Services states that the purpose of PRAMS is to reduce infant morbidity and mortality by influencing programmes and policies aimed at reducing health problems among mothers and infants. As an infant is around three times more likely to die in the US than in Finland, Japan or Sweden, this seems like a pretty important data set.

[John Cubali]

It's something that is used both by policymakers and by researchers really to understand how are different aspects of maternal and child health changing over time and what populations are most impacted. That's really important information that you need to have if you're going to be considering how to design interventions to address some of those challenges.

[Tim Harford]

This data is collected by local states and governments and then sent to the CDC to be merged and for population weighting to be added. To access the data, researchers needed to apply for access and sign a declaration stating they wouldn't share the data.

[John Cubali]

I started getting contacted by researchers and essentially these requests were just going unanswered. I submitted multiple requests myself. I reached out to that office directly. You know, I never heard any response. And so essentially any of the data from the last 10 years, so 2016 or later, that's not publicly available. And so if you did not have access to that already, you're kind of out of luck at this point.

[Tim Harford]

Do we know whether they're still collecting the data?

[John Cubali]

Yeah, there is some uncertainty around that. There was an announcement, I believe in early to mid February saying, oh, we're going to discontinue this data collection. And there was a massive backlash and outcry and there was kind of a clarification, oh, no, we're not going to discontinue this, but we're going to kind of push it back until April 2025 and then we'll start it up again. But April 1, the entire prams office was essentially fired. And so now it's really uncertain what this means for this data collection moving forward.

[Tim Harford]

Since February, there's been a scramble to try and safeguard as much data as possible. Both Maggie and John are involved in this process, but snapshots of old web pages do not a full data set make.

[Maggie Levenstein]

So there's some data that you can't get to at all. There's some data that we don't know is gone yet. There's also data that's been preserved, but we don't know for sure that it hasn't been changed. And you also don't have the context, what we call metadata, the description of the data, all the things that allow you to make inference from the data.

[Tim Harford]

The case remains open. Thanks to Maggie Levenstein and John Cubali. That is all we have time for this week, but if you have any questions or comments, please email in to more or lessbc.com until next week. Goodbye.

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[Maggie Levenstein]

America is changing, and so is the world.

[Tim Harford]

But what's happening in America isn't just a cause of global upheaval. It's also a symptom of disruption that's happening everywhere.

[Maggie Levenstein]

I'm Asma Khalid in Washington, D.C. i'm.

[Tim Harford]

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[Tim Harford]

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