How Trump’s DEI Ban Will Affect Medical Research

FLORA LICHTMAN: This is Science Friday. I’m Flora Lichtman. On President Trump’s first day in office, he ended what he calls, quote, “illegal and immoral discrimination programs,” referencing diversity, equity, and inclusion in the federal government. Today, we’re talking about the ramifications of that order for science and medicine.

Things are changing fast. Last week, a federal judge in Maryland temporarily blocked parts of the purge from being carried out. But at the same time, federal research agencies have already started making changes.

For example, the NIH suddenly closed applications for grants focused on promoting diversity within science. The agency has canceled studies mid-project, like one on LGBTQ cancer patients. The CDC took down resources for HIV prevention, trans health, contraception, and more. The FDA pulled its guidance on the importance of having some diversity in clinical trials, like to test drugs and medical devices.

So what does banning DEI mean for medical research? And what does it mean for our health? Joining me to discuss are Dr. Rachel Hardeman, director of the Center for Anti-Racism Research for Health and Equity and professor at the University of Minnesota in Minneapolis, and Dr. Melissa Simon, OB/GYN and professor at Northwestern Medicine and director of the Center for Health Equity Transformation in Chicago. Welcome to you both to Science Friday.

MELISSA SIMON: Thank you.

RACHEL HARDEMAN: Thanks so much.

FLORA LICHTMAN: Rachel, Trump’s DEI executive order says that the government will terminate, quote, “diversity, equity, inclusion, and accessibility mandates, policies, programs, preferences, and activities in the federal government under whatever name they appear.” That seems vague and broad. In federal science and medicine, who is it up to, to figure out what that means in practice?

RACHEL HARDEMAN: That is an excellent question. And I think no one actually fully knows the answer to that question. And as a result, we are actually seeing a lot of shifts and questions and posturing happening to be able to circumnavigate or circumvent what’s happening and what those directives are because there isn’t a lot of clarity on who gets to make those decisions and what that looks like.

And so in some spaces, you see the work continuing as is. And then in other spaces, what we’re seeing is institutions really backing away and being a lot more careful about how they’re proceeding with the work because it’s incredibly important, no matter what the words are that are being used.

The bottom line is that if people aren’t getting what they need to have a healthy baby, for instance, we should be doing something about that. We should be asking questions and conducting research to figure out how to change that.

FLORA LICHTMAN: Melissa, we’ve been hearing about these flagged words that agencies like NIH and NSF are looking for in grants and program areas. What does it even mean to be flagged? What are some of the words on that list?

MELISSA SIMON: In my mind, it means censorship. It means that words have become weapons. So some of the words are “diversity,” “diverse training,” “diversity training,” “women,” “women’s health,” “gender,” “women.” So pretty much everything that I personally work on as a practicing obstetrician at Northwestern and a health equity scientist. Pretty much everything that I work on right now is being weaponized against me. And it’s my own expertise that I actually achieved promotion and tenure on and am now being censored for.

FLORA LICHTMAN: What happens when a word is flagged, Rachel?

RACHEL HARDEMAN: So I think we’re still figuring that out, but a lot of it is– if we’re talking about within a research proposal pipeline, so someone has written a research proposal and submitted it to the NIH or to another entity, federal agency.

So I serve on a study section for the National Institutes of Health. And in that capacity, we are assigned different applications or research proposals to review. It’s possible that with these flagged words that those proposals won’t even get to study section, right? We won’t even see them to review them for their merit and help guide decisions around funding.

But a lot of that is unknown at this point. And I think it’s important to be clear about that because right now, we’re moving in a space with a lot of questions and a lot of fear. And I think fear-driven decision-making can be incredibly harmful. And it actually stops the work from happening without actually knowing what the consequences would be in that space.

And so as a reproductive health researcher, as someone who is very much steeped in the health equity and anti-racism space, I have to weigh both what’s the potential consequence here for continuing to build the evidence base that I know to be incredibly important for shifting health outcomes for women and for people all across our country.

FLORA LICHTMAN: Yeah, I mean, what kind of research is being affected by this order already and is likely to be affected by this?

RACHEL HARDEMAN: Yes, I would say that broadly speaking, all research is being affected by this because no matter what the research topic is, particularly when it comes to health and well-being, if we are not centering and ensuring that a diverse workforce is working on the research and is able to submit their proposals, then it’s going to have an impact on our knowledge and the generation of new knowledge for everyone in our society.

But specifically, I lose sleep at night worrying about the impact on women’s health research and on reproductive health research specifically because it has been so woefully underfunded and ignored for so long already. And so then when you combine that with the rising political attacks on reproductive rights and the anti-DEI policies that are discouraging our ability to conduct research around contraception, pregnancy complications, maternal mortality and morbidity, perimenopause– these spaces that have, again, been ignored for so long.

And so as we think about what’s happening here, I think we have to be able to put all of those pieces together and recognize, for instance, that even the removal of a data set like the PRAMS data set from the CDC, the Pregnancy Risk Assessment Monitoring System– is a data set where states have been contributing data on pregnancy and childbirth for years. And that has allowed different researchers like myself to be able to dig into what’s happening and what those birth and pregnancy experiences look like across different communities.

And without that information, without that data, we can’t write a proposal to be able to study the newest iteration of that data set and get it funded to improve health care outcomes and maternal outcomes. We’re going to further set ourselves back as a society and as a country and our ability to care for half of our population.

FLORA LICHTMAN: There’s some irony here, too, because this administration has said it’s very concerned about falling birth rates.

RACHEL HARDEMAN: Yes, exactly.

FLORA LICHTMAN: You know?

RACHEL HARDEMAN: And even the decisions that are being made around access to fertility care, we are going to improve access to fertility care. We need to make sure that everyone can have a safe pregnancy. As a country that has one of the only rising maternal mortality rates, as an industrialized nation, we have a lot of work yet to do to understand how to change that. And every decision that’s being made right now coming out of the White House is going to impact our ability to do that well.

FLORA LICHTMAN: NIH has had guidance on considering sex differences in clinical research. Talk to me about why that matters.

MELISSA SIMON: Sex does matter in research of all types, and gender does as well. And even in studies with animals, there should be male versus female animals, such as mice, because it actually makes a difference. When you consider some medical treatments, there actually are different dosing and different types of medications that work better in females than in males and vice versa.

And so if we start flagging the word “woman” or “gender” or “sex,” and we defund what already is underfunded with respect to women’s health research at NIH, then all we’re doing is going even further backwards with respect to advancing the health of every person in this country, which is completely contradictory to NIH’s mission to advance health for all in this country.

FLORA LICHTMAN: Melissa, I mean, if “female” is flagged, could women’s health generally or prenatal care be off-limits because it leaves men out?

MELISSA SIMON: Yes, “women’s health” is on that list of flagged words or phrases. And so what that means is, for all the women in this country who care about the treatments they get are accurate for them and dosed right for them, and all the men in this country that care about women, it is really important to understand that this word and this list can be dangerous to that extent, to decrease or defund research that aims to ensure that women are taken care of in this country correctly.

FLORA LICHTMAN: Rachel, we’ve been seeing DEI cuts outside of government, too. Like Howard Hughes Medical Institute cut an initiative designed to make STEM education more inclusive. What do you make of all that?

RACHEL HARDEMAN: Oh, man. [CHUCKLES] I’ve thought about this a lot over the past few weeks. And I say this as someone who has been working in this space of anti-racism, of DEI, of health equity, far before it was popular to do so. And when I refer to it being popular to do so, I’m referring to the 2020 murder of George Floyd here in Minneapolis, where that certainly sparked a racial awakening and a reckoning across not just our country, but the world.

And I recall during that time being asked often if I thought that this was a moment or if it were a movement. And I always struggle to answer the question because for me, it was like, time will tell, because what we know if we look at history is that whenever there’s a reckoning of some sort, and then progress is made, there’s pushback against that progress.

And so I think we’re seeing that right now. And sadly, the answer isn’t what I hoped for. And the examples of that are this backing off of investing in work that it felt great to invest in and to pat our backs about almost five years ago. And so in some ways, the cynical side of me is like, OK, well, there wasn’t a full commitment to begin with. And so it’s very easy to detach oneself from the work and from that investment when it wasn’t really part of our core value.

And so I think we’re seeing some of that right now. And also I think we’re seeing a lot of fear, again, fear-driven decisions and a fear of the unknown. And so it’s like, well, let’s just fall in line so that we don’t have to worry about the potential fallout.

MELISSA SIMON: I want to emphasize that DEI, what we’re talking about here, is not just about race, racism, and ethnicity. It includes a whole bunch of other groups. So when you get rid of the words or flag the words “DEI,” you’re also flagging the issues around women, because DEI initiatives actually advance women, and specifically, white women.

It advances people who live in rural areas. It advances people who are living with disabilities of any form. It advances people who need things like in vitro fertilization or IVF or fertility treatments. It even advances issues around veterans and veterans’ health and, of course, LGBTQ people.

So I think that there’s a wide range of what DEI includes. And so when you get rid of DEI or fold that, all of that together into a bucket and flag it and say, it’s no longer, you are including all of these groups, and that’s dangerous.

FLORA LICHTMAN: Have you had to make any changes to your work during this time, Melissa?

MELISSA SIMON: Yes. I am a full tenured professor at Northwestern and was told last week that I had to scrub all of my websites of certain words.

FLORA LICHTMAN: Told by whom?

MELISSA SIMON: By Northwestern University. Because we in the medical school risked losing our federal funding. That was a problem because I’m a full tenured professor, and I purposely worked really hard to gain tenure at Northwestern so that I could have so-called academic freedom. I also am the number one NIH-funded faculty member in the country, in OB/GYN departments, through the Blue Ridge rankings. Those were just put out this week.

So the work that I am famous for and have been inducted into the National Academy of Medicine for, I am being censored of right now because those words are being weaponized. And so it is a very ironic time where all the two decades of work that is meritorious and culminated in being the number one funded person, fully based on my merit, is being undermined by words. And that’s it– words.

RACHEL HARDEMAN: I really appreciate, Melissa, how you just described your experience. I think it’s important for folks to understand what is happening right now and in this moment. And for me, I think there’s something important about to understand about being at a public institution, a public university. For me, what that experience has been a lot of silence and/or confusion and lack of clarity.

And so being able to do my job on a given day in this moment is really– it’s unclear what the path forward is and where academic freedom lies. And so I think relying on the core of why we do the work that we’re doing and why it’s important is even more critical during this moment.

FLORA LICHTMAN: Rachel, what do you want to leave our listeners with?

RACHEL HARDEMAN: Oh, so much. So I think I would say, diversity– And I actually don’t tend to use the phrase “DEI” or “diversity” all that much because I don’t feel like it fully captures what this means.

But for lack of a better phrase, in this moment, I think that diversity in research isn’t just about fairness. It’s about making sure that our research and the decisions based on that research are safe, are effective, and are inclusive particularly for populations who have not been considered when it comes to research and opportunities simply for health and well-being.

So as we’re seeing this rollback of DEI policies, it’s not just hurting individual folks. It is hurting and it will continue to hurt science itself and the ability to generate new knowledge to improve health and well-being.

MELISSA SIMON: We need the public right now. We need the public to weigh in. Research and science are the key to advancing health for every single person in the public right now. For every single person in our country, that is what, collectively, research aims to do, to improve the health.

And so when you weaponize a few words like “diversity, equity and inclusion,” and even just “women,” “female,” “gender,” and “women’s health,” you do all of us a disservice. And so we need the public to weigh in and help us make health a priority again.

FLORA LICHTMAN: Thank you both for joining me today.

RACHEL HARDEMAN: Thank you so much for having us.

MELISSA SIMON: Thank you.

FLORA LICHTMAN: Dr. Rachel Hardeman is the director for the Center of Anti-Racism Research for Health Equity and a professor at the University of Minnesota in Minneapolis. Dr. Melissa Simon is an OB/GYN and professor at Northwestern Medicine and director of the Center for Health Equity Transformation in Chicago.

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