Sign up for the Slatest to get the most insightful analysis, criticism, and advice out there, delivered to your inbox daily.
Try navigating through any federal website today, and you might find yourself on a 404 page, especially if you clicked on anything that previously mentioned diversity or equity. It can look a bit like someone hit CTRL-F-Delete for these terms—which is, in essence, what many federal agencies did in response to the Trump administration’s order targeting diversity, equity, inclusion, and accessibility (also known as DEIA) programs.
While the executive order was most clearly aimed at initiatives involving workforce diversity, among health agencies like the National Institutes of Health, the Centers for Disease Control and Prevention, and the Food and Drug Administration, another type of resource winked out of existence. Many of these agencies’ websites were effectively scrubbed of any information on diverse populations in medical research.
Clinical trials—and all the other studies that inform the health care each of us receives—have long had issues with most of their participants being cis white men. This lack of representation has allowed health disparities to fester, and in this new vacuum of information, these problems will only become more difficult to address. It’s also just fundamentally bad science. How can you understand the health of a whole population if only some kinds of people are ever studied?
In mid-February, I decided to leave a job I had loved as a science writer at the NIH, in large part because it seemed as if I would no longer be able to do the parts of my job that had once felt meaningful. Up until the inauguration, I’d been working on a team of bioethicists, educators, and clinical staff to develop resources about sex and gender in genomics research. Some of these resources were for the general public, aiming to provide clear and factual information in an era with mounting misinformation about the relationships between sex, gender, and our genomes.
Other parts of this project were geared toward the people the NIH funds, the scientists and doctors who recruit participants and carry out clinical studies. We’d been putting together resources that covered both why it’s important to include people of diverse genders in medical research and how to do so effectively, such as by designing questions that don’t erase trans identities.
This project, however, came to a halt immediately after the inauguration. When, after I left, I went to see if any of the existing resources had survived, housed within NIH’s Sexual and Gender Minority Research Office, the entire internet presence of the office was gone, an error message in its place. As I write this article, this is still how it looks.
That office, like many others focused on inclusion in research, hadn’t even celebrated its 10th birthday. The information plucked off federal websites was part of a very recent effort to fix an old problem. We therefore don’t have to look far into the past to see the consequences of these executive orders on medical research.
Women were banned from participating in clinical trials from 1977 to 1993. This policy was put in place by the FDA for fear that if anyone became pregnant during a study, there could be unknown side effects for the fetus. As a result, new drugs and medical devices and even surgeries were tested only in male participants, and even before anything made it to humans, most medical studies used only male mice.
This ban still has lingering effects on women’s health. Many drugs on the market today were studied only in cis men, and cis women are 50 to 75 percent more likely to have adverse reactions to medications. Recent studies indicate this stems from subtle differences in metabolism that weren’t accounted for during clinical trials because no female participants were involved. Even after the ban was lifted, the numbers haven’t exactly caught up. In recent years, women have made up about 40 percent of clinical trial participants among studies for common conditions like cancer and heart disease, despite being half the population who has these conditions.
The numbers are less clear for other identities, such as race—federally funded clinical trials weren’t widely required to report demographic information until 2017—but the general consensus is that clinical trial participants aren’t representative of the entire population. And in many cases, the people left out are those most at risk for the condition being studied. For example, during the COVID-19 pandemic, Black people accounted for 21 percent of deaths from the virus but only 3 percent of vaccine trial participants.
To help researchers—who are also often predominantly white and male—learn about and work to address these health disparities, the NIH, FDA, and CDC websites once housed a variety of fact sheets, guidelines, and reports, many of which are now missing. Working in a communications office, my colleagues and I helped draft resources like these and distribute them widely so that they could hopefully find themselves in the hands of researchers and potential participants alike.
And efforts from governmental agencies are likely no small part of the steady but incremental growth in diversity among research participants. The enrollment of clinical trial participants from underrepresented groups has been increasing by about 1.7 percent a year since 2000, according to a study that also found that federally funded clinical trials are better at recruiting more racially diverse groups than are trials led by private companies. Or at least they have been.
In addition to removing available resources, the Trump administration has directed scientific agencies to comb grants for words including women, Black, Latinx, and LGBTQ. In my last few days at the NIH, I was also told, in a directive passed down from a superior, that we were no longer allowed to use terms like health equity. (An NIH fact sheet titled “What Is Health Equity?” is, for example, now blank, with a note saying that it’s “under revision.”) The extent to which these policies will affect the future of medical research is unknown, and probably impossible to quantify, but it’s not easy to improve something you can’t even talk about.
These directives will not only affect what federal agencies are able to do to increase diversity but are also likely to shake the trust of potential participants. Because if your identity is now a flagged word, how safe will you feel participating in a study that asks you to take a new kind of drug? Especially as some programs on the ethics of medical research have also gone dark.
Many people already don’t trust government health agencies, and for good reason. These institutions have funded or carried out studies that have caused harm, especially to Black, Indigenous, trans, and disabled people. The infamous Tuskegee syphilis study, which ran until 1972 and resulted in the deaths of over 100 Black men, was led by part of the U.S. Public Health Service, which is now the agency known as the CDC. The Indian Health Service has a lengthy record of abuses against the people whose health the federal agency is supposed to protect, including sterilizing Indigenous women without their consent.
Even if the recent anti-diversity executive orders are eventually reversed, trust doesn’t grow back overnight. Parts of the FDA and CDC websites have already been restored in response to a judge’s order, including pages from the FDA’s health equity office that encourage clinical-trial participation among diverse participants. But some pages—like this one and this one—now display banners about how the information presented is “extremely inaccurate” as it relates to “the immutable biological reality that there are two sexes,” even though this is not the scientific consensus at all. How many people this will deter, no one knows, but it would give me pause in joining a medical study, to say the least.
And how many lives these policies will affect is immeasurable. What we do know is that health disparities shorten life expectancies and lead to premature deaths that may have been preventable. But you can’t treat what you’re not willing to look at in the first place.
