Speaker 2
Jeremy's job is to use data to try to figure out what is going on and how to help your baby.
Speaker 3
So, you know, about one in 14 individuals has a rare disease. And so we'll go in and we'll do a genetic sequencing on the patient and then start saying, what is that? Sometimes we get lucky and the answer sits right there. Sometimes it's way more complex.
Speaker 2
And that can mean checking against data and reports from the Centers for Disease Control or the National Institutes of Health. If
Speaker 3
I can connect a patient here to a patient that might be sitting in another country, but they have the same genetic mutation, we can connect the dots and really help that patient find a treatment because it might be that other patient had a treatment already.
Speaker 2
And how much of that data comes from the federal government? I
Speaker 3
would say most of it comes from the federal government at some level. Some of the data might be sitting in databases like the CDC or NIH runs what we call the NCBI, which houses just petabytes of data that we can access. And
Speaker 2
then turn that information into action. But right now, a number of websites and data sets from the CDC and NIH are offline, along with data across the government. They were taken down or modified to comply with President Trump's executive orders around gender and diversity. According to one analysis by The New York Times, 8,000 government webpages were taken offline since January 31st. Other information went offline and has now reappeared. At one point, the main census website was inaccessible.
Speaker 3
You know, a lot of the CDC things came back, but there are still pieces of it, especially around HIV and gender aspects that still aren't there. And so are we ever going to get access to that data again?
