Yesterday I broke the news that the CDC has indefinitely shuttered the Pregnancy Risk Assessment Monitoring System (PRAMS), a comprehensive federal data collection program “designed to identify groups of women and infants at high risk for health problems, to monitor changes in health status, and to measure progress towards goals in improving the health of mothers and infants,” which has been in operation since 1988. CDC ordered a halt to collection of 2024 data effective January 31st of this year and put the entire 2025 program on indefinite hold.
This matches of course with the general HHS-wide crackdown on public health and research. But it still wasn’t clear precisely why the program had been shuttered or whether it might ever come back. Based on my sources, I can now report that the issue does not appear to be the various ways that comprehensive research on pregnancy might be perceived as bumping up against controversies over abortion and other politicized issues of reproductive health care. The issue is what the administration calls “DEI.” The questionnaires include questions about racism, discrimination, sexual orientation and identity, and an array of questions which look at how socioeconomic status can affect health. Some but not all of those question were new as of 2023 and basically all of them have to go.
Various other details about specific kinds of questions that might be on the chopping block were shared with me. But I take it that at the margins what’s getting cut and what’s not isn’t entirely clear. And I’m focusing here on the general areas since this kind of research is way outside my expertise. But the gist is that the current survey and research protocol include questions about race, sexual orientation and identity and class status. And those all have to go because of the President’s executive order on “DEI”.
One of the ironies about this, as one of my sources notes, is that the origins of the PRAMS program in the 1980s were in efforts to find out why Black (and to a lesser extent Native American) moms and their children had consistently worse health outcomes than white mothers and their children. So the idea that the health information PRAMS is designed to surface and make available can be separated from the racial/ethnic or class background of mothers and children is flawed on its face.
I’m told that CDC employees who work on PRAMS have been told that the program will eventually continue absent those questions. But that itself is a lengthy process, re-writing the research protocol, getting it reviewed in all the ways major public health projects need to be reviewed, and so forth. (I take it that the current IRB review of PRAMS, which I reported yesterday, is tied to the changes to the questionnaire, though connecting those two is based on my inference and not my direct reporting.) The additional factor is that there is a colossal backlog of government programs, documents, research projects and so forth which the White House insists must be cleansed of “DEI” (which amounts under their definition to any discussions of race, economic status, sexual orientation and identity). And they – or I take it OMB – is insisting on being the judge of what passes muster in being truly DEI-free. What that means is that even if we take this plan more or less at face value — strip out the bad “DEI” questions and get back to work — that may not actually happen for quite some time.
