Massive, Unarchivable Datasets of Cancer, Covid, and Alzheimer’s Research Could Be Lost Forever


Article by Sam Cole: “Almost two dozen repositories of research and public health data supported by the National Institutes of Health are marked for “review” under the Trump administration’s direction, and researchers and archivists say the data is at risk of being lost forever if the repositories go down. 

“The problem with archiving this data is that we can’t,” Lisa Chinn, Head of Research Data Services at the University of Chicago, told 404 Media. Unlike other government datasets or web pages, downloading or otherwise archiving NIH data often requires a Data Use Agreement between a researcher institution and the agency, and those agreements are carefully administered through a disclosure risk review process. 

A message appeared at the top of multiple NIH websites last week that says: “This repository is under review for potential modification in compliance with Administration directives.”

Repositories with the message include archives of cancer imagery, Alzheimer’s disease research, sleep studies, HIV databases, and COVID-19 vaccination and mortality data…

“So far, it seems like what is happening is less that these data sets are actively being deleted or clawed back and more that they are laying off the workers whose job is to maintain them, update them and maintain the infrastructure that supports them,” a librarian affiliated with the Data Rescue Project told 404 Media. “In time, this will have the same effect, but it’s really hard to predict. People don’t usually appreciate, much less our current administration, how much labor goes into maintaining a large research dataset.”…(More)”.

Europe’s GDPR privacy law is headed for red tape bonfire within ‘weeks’


Article by Ellen O’Regan: “Europe’s most famous technology law, the GDPR, is next on the hit list as the European Union pushes ahead with its regulatory killing spree to slash laws it reckons are weighing down its businesses.

The European Commission plans to present a proposal to cut back the General Data Protection Regulation, or GDPR for short, in the next couple of weeks. Slashing regulation is a key focus for Commission President Ursula von der Leyen, as part of an attempt to make businesses in Europe more competitive with rivals in the United States, China and elsewhere. 

The EU’s executive arm has already unveiled packages to simplify rules around sustainability reporting and accessing EU investment. The aim is for companies to waste less time and money on complying with complex legal and regulatory requirements imposed by EU laws…Seven years later, Brussels is taking out the scissors to give its (in)famous privacy law a trim.

There are “a lot of good things about GDPR, [and] privacy is completely necessary. But we don’t need to regulate in a stupid way. We need to make it easy for businesses and for companies to comply,” Danish Digital Minister Caroline Stage Olsen told reporters last week. Denmark will chair the work in the EU Council in the second half of 2025 as part of its rotating presidency.

The criticism of the GDPR echoes the views of former Italian Prime Minister Mario Draghi, who released a landmark economic report last September warning that Europe’s complex laws were preventing its economy from catching up with the United States and China. “The EU’s regulatory stance towards tech companies hampers innovation,” Draghi wrote, singling out the Artificial Intelligence Act and the GDPR…(More)”.

AI, Innovation and the Public Good: A New Policy Playbook


Paper by Burcu Kilic: “When Chinese start-up DeepSeek released R1 in January 2025, the groundbreaking open-source artificial intelligence (AI) model rocked the tech industry as a more cost-effective alternative to models running on more advanced chips. The launch coincided with industrial policy gaining popularity as a strategic tool for governments aiming to build AI capacity and competitiveness. Once dismissed under neoliberal economic frameworks, industrial policy is making a strong comeback with more governments worldwide embracing it to build digital public infrastructure and foster local AI ecosystems. This paper examines how the national innovation system framework can guide AI industrial policy to foster innovation and reduce reliance on dominant tech companies…(More)”.

DOGE comes for the data wonks


The Economist: “For nearly three decades the federal government has painstakingly surveyed tens of thousands of Americans each year about their health. Door-knockers collect data on the financial toll of chronic conditions like obesity and asthma, and probe the exact doses of medications sufferers take. The result, known as the Medical Expenditure Panel Survey (MEPS), is the single most comprehensive, nationally representative portrait of American health care, a balkanised and unwieldy $5trn industry that accounts for some 17% of GDP.

MEPS is part of a largely hidden infrastructure of government statistics collection now in the crosshairs of the Department of Government Efficiency (DOGE). In mid-March officials at a unit of the Department of Health and Human Services (HHS) that runs the survey told employees that DOGE had slated them for an 80-90% reduction in staff and that this would “not be a negotiation”. Since then scores of researchers have taken voluntary buyouts. Those left behind worry about the integrity of MEPS. “Very unclear whether or how we can put on MEPS” with roughly half of the staff leaving, one said. On March 27th, the health secretary, Robert F. Kennedy junior, announced an overall reduction of 10,000 personnel at the department, in addition to those who took buyouts.

There are scores of underpublicised government surveys like MEPS that document trends in everything from house prices to the amount of lead in people’s blood. Many provide standard-setting datasets and insights into the world’s largest economy that the private sector has no incentive to replicate.

Even so, America’s system of statistics research is overly analogue and needs modernising. “Using surveys as the main source of information is just not working” because it is too slow and suffers from declining rates of participation, says Julia Lane, an economist at New York University. In a world where the economy shifts by the day, the lags in traditional surveys—whose results can take weeks or even years to refine and publish—are unsatisfactory. One practical reform DOGE might encourage is better integration of administrative data such as tax records and social-security filings which often capture the entire population and are collected as a matter of course.

As in so many other areas, however, DOGE’s sledgehammer is more likely to cause harm than to achieve improvements. And for all its clunkiness, America’s current system manages a spectacular feat. From Inuits in remote corners of Alaska to Spanish-speakers in the Bronx, it measures the country and its inhabitants remarkably well, given that the population is highly diverse and spread out over 4m square miles. Each month surveys from the federal government reach about 1.5m people, a number roughly equivalent to the population of Hawaii or West Virginia…(More)”.

Trump Admin Plans to Cut Team Responsible for Critical Atomic Measurement Data


Article by Louise Matsakis and Will Knight: “The US National Institute of Standards and Technology (NIST) is discussing plans to eliminate an entire team responsible for publishing and maintaining critical atomic measurement data in the coming weeks, as the Trump administration continues its efforts to reduce the US federal workforce, according to a March 18 email sent to dozens of outside scientists. The data in question underpins advanced scientific research around the world in areas like semiconductor manufacturing and nuclear fusion…(More)”.

Panels giving scientific advice to Census Bureau disbanded by Trump administration


Article by Jeffrey Mervis: “…U.S. Secretary of Commerce Howard Lutnick has disbanded five outside panels that provide scientific and community advice to the U.S. Census Bureau and other federal statistical agencies just as preparations are ramping up for the country’s next decennial census, in 2030.

The dozens of demographers, statisticians, and public members on the five panels received nearly identical letters this week telling them that “the Secretary of Commerce has determined that the purposes for which the [committee] was established have been fulfilled, and the committee has been terminated effective February 28, 2025. Thank you for your service.”

Statistician Robert Santos, who last month resigned as Census Bureau director 3 years into his 5-year term, says he’s “terribly disappointed but not surprised” by the move, noting how a recent directive by President Donald Trump on gender identity has disrupted data collection for a host of federal surveys…(More)”.

Government data is disappearing before our eyes


Article by Anna Massoglia: “A battle is being waged in the quiet corners of government websites and data repositories. Essential public records are disappearing and, with them, Americans’ ability to hold those in power accountable.

Take the Department of Government Efficiency, Elon Musk’s federal cost-cutting initiative. Touted as “maximally transparent,” DOGE is supposed to make government spending more efficient. But when journalists and researchers exposed major errors — from double-counting contracts to conflating caps with actual spending — DOGE didn’t fix the mistakes. Instead, it made them harder to detect.

Many Americans hoped DOGE’s work would be a step toward cutting costs and restoring trust in government. But trust must be earned. If our leaders truly want to restore faith in our institutions, they must ensure that facts remain available to everyone, not just when convenient.

Since Jan. 20, public records across the federal government have been erased. Economic indicators that guide investments, scientific datasets that drive medical breakthroughs, federal health guidelines and historical archives that inform policy decisions have all been put on the chopping block. Some missing datasets have been restored but are incomplete or have unexplained changes, rendering them unreliable.

Both Republican and Democratic administrations have played a role in limiting public access to government records. But the scale and speed of the Trump administration’s data manipulation — combined with buyouts, resignations and other restructuring across federal agencies — signal a new phase in the war on public information. This is not just about deleting files, it’s about controlling what the public sees, shaping the narrative and limiting accountability.

The Trump administration is accelerating this trend with revisions to official records. Unelected advisors are overseeing a sweeping reorganization of federal data, granting entities like DOGE unprecedented access to taxpayer records with little oversight. This is not just a bureaucratic reshuffle — it is a fundamental reshaping of the public record.

The consequences of data manipulation extend far beyond politics. When those in power control the flow of information, they can dictate collective truth. Governments that manipulate information are not just rewriting statistics — they are rewriting history.

From authoritarian regimes that have erased dissent to leaders who have fabricated economic numbers to maintain their grip on power, the dangers of suppressing and distorting data are well-documented.

Misleading or inconsistent data can be just as dangerous as opacity. When hard facts are replaced with political spin, conspiracy theories take root and misinformation fills the void.

The fact that data suppression and manipulation has occurred before does not lessen the danger, but underscores the urgency of taking proactive measures to safeguard transparency. A missing statistic today can become a missing historical fact tomorrow. Over time, that can reshape our reality…(More)”.

A crowd-sourced repository for valuable government data


About: “DataLumos is an ICPSR archive for valuable government data resources. ICPSR has a long commitment to safekeeping and disseminating US government and other social science data. DataLumos accepts deposits of public data resources from the community and recommendations of public data resources that ICPSR itself might add to DataLumos. Please consider making a monetary donation to sustain DataLumos…(More)”.

The Age of AI in the Life Sciences: Benefits and Biosecurity Considerations


Report by the National Academies of Sciences, Engineering, and Medicine: “Artificial intelligence (AI) applications in the life sciences have the potential to enable advances in biological discovery and design at a faster pace and efficiency than is possible with classical experimental approaches alone. At the same time, AI-enabled biological tools developed for beneficial applications could potentially be misused for harmful purposes. Although the creation of biological weapons is not a new concept or risk, the potential for AI-enabled biological tools to affect this risk has raised concerns during the past decade.

This report, as requested by the Department of Defense, assesses how AI-enabled biological tools could uniquely impact biosecurity risk, and how advancements in such tools could also be used to mitigate these risks. The Age of AI in the Life Sciences reviews the capabilities of AI-enabled biological tools and can be used in conjunction with the 2018 National Academies report, Biodefense in the Age of Synthetic Biology, which sets out a framework for identifying the different risk factors associated with synthetic biology capabilities…(More)”

A Funder’s Guide to Citizens’ Assemblies


Democracy Funders Network: “For too many Americans, the prospect of engaging with lawmakers about the important issues in their lives is either logistically inaccessible, or unsatisfactory in result. Exploring An Innovative Approach to Democratic Governance: A Funder’s Guide to Citizens’ Assemblies, produced by Democracy Funders Network and New America, explores the potential for citizens’ assemblies to transform and strengthen democratic processes in the U.S. The guide offers philanthropists and in-depth look at the potential opportunities and challenges citizens’ assemblies present for building civic power at the local level and fomenting authentic civic engagement within communities.

Citizens’ assemblies belong in the broader field of collaborative governance, an umbrella term for public engagement that shifts governing power and builds trust by bringing together government officials and community members to collaborate on policy outcomes through shared decision-making…(More)”.