AILSA CHANG, HOST:
Last week, web pages and data across federal health agencies disappeared in response to executive orders from President Trump on issues like gender identity and diversity, equity and inclusion. These now unavailable web pages covered a broad range of topics from adolescent health to HIV to gender identity and racial equity. Now many scientists across the U.S. are racing to preserve this data. Nancy Krieger is one of those scientists. She's a professor of social epidemiology at Harvard University and joins us now. Welcome.
NANCY KRIEGER: Thank you very much.
CHANG: I understand that last week you launched what's called a datathon (ph) in response to all of this federal health data disappearing from websites. What did that datathon entail exactly? Like, who was involved, and what did you do?
KRIEGER: So it was a group of us ad hoc that came together because we want to preserve public health data that are crucial for people's well-being. And we were aware that environmental scientists have - since November especially, but before - cataloging and preserving big datasets that are relevant to understanding what's going on in the environment, including wildfire smoke and much else.
CHANG: Absolutely.
KRIEGER: But we were surprised by - was the websites themselves coming down.
CHANG: So how did you pinpoint the breadth of stuff that had suddenly disappeared and then find the original content? And then how did you preserve it?
KRIEGER: So it's a work in process. We're very fortunate that there are tools available on the internet. One is called the Wayback Machine, that actually just keeps preserving whatever happens to be on the web. And you can see when it was last on the web and when it disappears from the web. And we developed a list of search terms. Those search terms were based on what was in the range of executive orders that were issued since January 20. They were based, in part, on a list that was shared of keywords that were being used at the CDC to search on data and to search on websites.
CHANG: OK, so give us one example that springs to mind of a webpage or a dataset that has disappeared from a government website that you are now trying to preserve because it is so crucial for the public to understand this data.
KRIEGER: So one very vivid example - and I think it's really important to know that the executive order that's behind much of this takedown has as the first words, defending women. So if one does a search and look for CDC gender-based violence, there was a page that used to exist that had the heading "Ending Gender-Based Violence, Global Health, CDC." And this was dated November 18, 2024, when that page was put up. And it said, adolescent girls and young women bear a disproportionate burden of HIV worldwide. This is driven by challenges like gender-based violence and difficulties accessing HIV services. If you search for that page now, the message you get is the page you're looking for was not found.
CHANG: Wow. What is the loss, the cost to society when you lose access to information like this, at least ready access?
KRIEGER: There are so many ways to reckon the cost, but I'll start with people's lives. I have no idea how many lives will be lost because of this, but I am sure that there will be excess mortality and excess suffering, mentally and physically. And I think it's another important point to make - is that for all the critique that's being made of the concerns about inclusivity, inclusivity increased who was represented and visible in the data, never took anybody away. These steps are censorship. It's effectively a digital book burning. Reality doesn't disappear because these data are no longer accessible.
CHANG: Absolutely. Are you personally worried that there could be legal or professional consequences to you personally for pushing this effort at preserving the data?
KRIEGER: I am an academic. I teach. This is protected activity. And in terms of whether this means I could be singled out, I don't know. I mean, my own research focuses fundamentally on health equity, and those are topics that are up for grabs right now in terms of what's going to be funded or not. But that's not me individually. That's an entire field.
I think what is so striking - I was asked by one person - how does this differ from when he came in the first time? Was there similar attempts to take this material down on the websites? And frankly, there was much less of this on the websites because the work was just being done. And the events, particularly around the racism in health, were impelled by all this social movement change that happened in the aftermath of the onset of the COVID pandemic. What incredible inequities that revealed instantly, combined with the police murder of George Floyd in 2020 also, led to the reckonings in many scientific institutions, not just the NIH and CDC, to start addressing the impacts of racism on health.
CHANG: Nancy Krieger is a professor of social epidemiology at Harvard University. Thank you very much for your work and for joining us today.
KRIEGER: Thank you. Transcript provided by NPR, Copyright NPR.
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