Conflicts over access to Americans’ personal data emerging across federal government

Curated on Posted on by Stefaan Verhulst

Article by Caitlin Andrews: “The Trump administration’s fast-moving efforts to limit the size of the U.S. federal bureaucracy, primarily through the recently minted Department of Government Efficiency, are raising privacy and data security concerns among current and former officials across the government, particularly as the administration scales back positions charged with privacy oversight. Efforts to limit the independence of a host of federal agencies through a new executive order — including the independence of the Federal Trade Commission and Securities and Exchange Commission — are also ringing alarm bells among civil society and some legal experts.

According to CNN, several staff within the Office of Personnel Management’s privacy and records keeping department were fired last week. Staff who handle communications and respond to Freedom of Information Act requests were also let go. Though the entire privacy team was not fired, according to the OPM, details about what kind of oversight will remain within the department were limited. The report also states the staff’s termination date is 15 April.

It is one of several moves the Trump administration has made in recent days reshaping how entities access and provide oversight to government agencies’ information.

The New York Times reports on a wide range of incidents within the government where DOGE’s efforts to limit fraudulent government spending by accessing sensitive agency databases have run up against staffers who are concerned about the privacy of Americans’ personal information. In one incident, Social Security Administration acting Commissioner Michelle King was fired after resisting a request from DOGE to access the agency’s database. “The episode at the Social Security Administration … has played out repeatedly across the federal government,” the Times reported…(More)”.

On Privacy and Technology

Curated on Posted on by Stefaan Verhulst

Book by Daniel J. Solove: “With the rapid rise of new digital technologies and artificial intelligence, is privacy dead? Can anything be done to save us from a dystopian world without privacy?

In this short and accessible book, internationally renowned privacy expert Daniel J. Solove draws from a range of fields, from law to philosophy to the humanities, to illustrate the profound changes technology is wreaking upon our privacy, why they matter, and what can be done about them. Solove provides incisive examinations of key concepts in the digital sphere, including control, manipulation, harm, automation, reputation, consent, prediction, inference, and many others.

Compelling and passionate, On Privacy and Technology teems with powerful insights that will transform the way you think about privacy and technology…(More)”.

Trump’s shocking purge of public health data, explained

Curated on Posted on by Stefaan Verhulst

Article by Dylan Scott: “In the initial days of the Trump administration, officials scoured federal websites for any mention of what they deemed “DEI” keywords — terms as generic as “diverse” and “historically” and even “women.” They soon identified reams of some of the country’s most valuable public health data containing some of the targeted words, including language about LGBTQ+ people, and quickly took down much of it — from surveys on obesity and suicide rates to real-time reports on immediate infectious disease threats like bird flu.

The removal elicited a swift response from public health experts who warned that without this data, the country risked being in the dark about important health trends that shape life-and-death public health decisions made in communities across the country.

Some of this data was restored in a matter of days, but much of it was incomplete. In some cases, the raw data sheets were posted again, but the reference documents that would allow most people to decipher them were not. Meanwhile, health data continues to be taken down: The New York Times reported last week that data from the Centers for Disease Control and Prevention on bird flu transmission between humans and cats had been posted and then promptly removed…

It is difficult to capture the sheer breadth and importance of the public health data that has been affected. Here are a few illustrative examples of reports that have either been tampered with or removed completely, as compiled by KFF.

The Behavioral Risk Factor Surveillance System (BRFSS), which is “one of the most widely used national health surveys and has been ongoing for about 40 years,” per KFF, is an annual survey that contacts 400,000 Americans to ask people about everything from their own perception of their general health to exercise, diet, sexual activity, and alcohol and drug use.

That in turn allows experts to track important health trends, like the fluctuations in teen vaping use. One recent study that relied on BRFSS data warned that a recent ban on flavored e-cigarettes (also known as vapes) may be driving more young people to conventional smoking, five years after an earlier Yale study based on the same survey led to the ban being proposed in the first place. The Supreme Court and the Trump administration are currently revisiting the flavored vape ban, and the Yale study was cited in at least one amicus brief for the case.

This survey has also been of particular use in identifying health disparities among LGBTQ+ people, such as higher rates of uninsurance and reported poor health compared to the general population. Those findings have motivated policymakers at the federal, state and local levels to launch new initiatives aimed specifically at that at-risk population.

As of now, most of the BRFSS data has been restored, but the supplemental materials that make it legible to lay people still has not…(More)”.

Digital Data and Advanced AI for Richer Global Intelligence

Curated on Posted on by Stefaan Verhulst

Report by Danielle Goldfarb: “From collecting millions of online price data to measure inflation, to assessing the economic impact of the COVID-19 pandemic on low-income workers, digital data sets can be used to benefit the public interest. Using these and other examples, this special report explores how digital data sets and advances in artificial intelligence (AI) can provide timely, transparent and detailed insights into global challenges. These experiments illustrate how governments and civil society analysts can reuse digital data to spot emerging problems, analyze specific group impacts, complement traditional metrics or verify data that may be manipulated. AI and data governance should extend beyond addressing harms. International institutions and governments need to actively steward digital data and AI tools to support a step change in our understanding of society’s biggest challenges…(More)”

Cities, health, and the big data revolution

Curated on Posted on by Stefaan Verhulst

Blog by Harvard Public Health: “Cities influence our health in unexpected ways. From sidewalks to crosswalks, the built environment affects how much we move, impacting our risk for diseases like obesity and diabetes. A recent New York City study underscores that focusing solely on infrastructure, without understanding how people use it, can lead to ineffective interventions. Researchers analyzed over two million Google Street View images, combining them with health and demographic data to reveal these dynamics. Harvard Public Health spoke with Rumi Chunara, director of New York University’s Center for Health Data Science and lead author of the study.

Why study this topic?

We’re seeing an explosion of new data sources, like street-view imagery, being used to make decisions. But there’s often a disconnect—people using these tools don’t always have the public health knowledge to interpret the data correctly. We wanted to highlight the importance of combining data science and domain expertise to ensure interventions are accurate and impactful.

What did you find?

We discovered that the relationship between built environment features and health outcomes isn’t straightforward. It’s not just about having sidewalks; it’s about how often people are using them. Improving physical activity levels in a community could have a far greater impact on health outcomes than simply adding more infrastructure.

It also revealed the importance of understanding the local context. For instance, Google Street View data sometimes misclassifies sidewalks, particularly near highways or bridges, leading to inaccurate conclusions. Relying solely on this data, without accounting for these nuances, could result in less effective interventions…(More)”.

Artificial Intelligence for Participation

Curated on Posted on by Stefaan Verhulst

Policy Brief by the Brazil Centre of the University of Münster: “…provides an overview of current and potential applications of artificial intelligence (AI) technologies in the context of political participation and democratic governance processes in cities. Aimed primarily at public managers, the document also highlights critical issues to consider in the implementation of these technologies, and proposes an agenda for debate on the new state capabilities they require…(More)”.

Will big data lift the veil of ignorance?

Curated on Posted on by Stefaan Verhulst

Blog by Lisa Herzog: “Imagine that you have a toothache, and a visit at the dentist reveals that a major operation is needed. You phone your health insurance. You listen to the voice of the chatbot, press the buttons to go through the menu. And then you hear: “We have evaluated your profile based on the data you have agreed to share with us. Your dental health behavior scores 6 out of 10. The suggested treatment plan therefore requires a co-payment of [insert some large sum of money here].”

This may sound like science fiction. But many other insurances, e.g. car insurances, already build on automated data being shared with them. If they were allowed, health insurers would certainly like to access our data as well – not only those from smart toothbrushes, but also credit card data, behavioral data (e.g. from step counting apps), or genetic data. If they were allowed to use them, they could move towards segmented insurance plans for specific target groups. As two commentators, on whose research I come back below, recently wrote about health insurance: “Today, public plans and nondiscrimination clauses, not lack of information, are what stands between integration and segmentation.”

If, like me, you’re interested in the relation between knowledge and institutional design, insurance is a fascinating topic. The basic idea of insurance is centuries old – here is a brief summary (skip a few paragraphs if you know this stuff). Because we cannot know what might happen to us in the future, but we can know that on an aggregate level, things will happen to people, it can make sense to enter an insurance contract, creating a pool that a group jointly contributes to. Those for whom the risks in question materialize get support from the pool. Those for whom it does not materialize may go through life without receiving any money, but they still know that they could get support if something happened to them. As such, insurance combines solidarity within a group with individual pre-caution…(More)”.

Flipping data on its head: Differing conceptualisations of data and the implications for actioning Indigenous data sovereignty principles

Curated on Posted on by Stefaan Verhulst

Paper by Stephanie Cunningham-Reimann et al: “Indigenous data sovereignty is of global concern. The power of data through its multitude of uses can cause harm to Indigenous Peoples, communities, organisations and Nations in Canada and globally. Indigenous research principles play a vital role in guiding researchers, scholars and policy makers in their careers and roles. We define data, data sovereignty principles, ways of practicing Indigenous research principles, and recommendations for applying and actioning Indigenous data sovereignty through culturally safe self-reflection, interpersonal and reciprocal relationships built upon respect, reciprocity, relevance, responsibility and accountability. Research should be co-developed, co-led, and co-disseminated in partnership with Indigenous Peoples, communities, organisations and/or nations to build capacity, support self-determination, and reduce harms produced through the analysis and dissemination of research findings. OCAP® (Ownership, Control, Access & Possession), OCAS (Ownership, Control, Access & Stewardship), Inuit Qaujimajatuqangit principles in conjunction the 4Rs (respect, relevance, reciprocity & responsibility) and cultural competency including self-examination of the 3Ps (power, privilege, and positionality) of researchers, scholars and policy makers can be challenging, but will amplify the voices and understandings of Indigenous research by implementing Indigenous data sovereignty in Canada…(More)”

Thousands of U.S. Government Web Pages Have Been Taken Down Since Friday

Curated on Posted on by Stefaan Verhulst

Article by Ethan Singer: “More than 8,000 web pages across more than a dozen U.S. government websites have been taken down since Friday afternoon, a New York Times analysis has found, as federal agencies rush to heed President Trump’s orders targeting diversity initiatives and “gender ideology.”

The purges have removed information about vaccines, veterans’ care, hate crimes and scientific research, among many other topics. Doctors, researchers and other professionals often rely on such government data and advisories. Some government agencies appear to have removed entire sections of their websites, while others are missing only a handful of pages.

Among the pages that have been taken down:

(The links are to archived versions.)

Establish data collaboratives to foster meaningful public involvement

Curated on Posted on by Stefaan Verhulst

Article by Gwen Ottinger: “…Data Collaboratives would move public participation and community engagement upstream in the policy process by creating opportunities for community members to contribute their lived experience to the assessment of data and the framing of policy problems. This would in turn foster two-way communication and trusting relationships between government and the public. Data Collaboratives would also help ensure that data and their uses in federal government are equitable, by inviting a broader range of perspectives on how data analysis can promote equity and where relevant data are missing. Finally, Data Collaboratives would be one vehicle for enabling individuals to participate in science, technology, engineering, math, and medicine activities throughout their lives, increasing the quality of American science and the competitiveness of American industry…(More)”.