You may have heard about the censorship of diversity, equality and inclusion policies occurring across the globe at the moment. This International Women's Day, we wanted to bring to light, and discuss, these alarming reversals and how science stands to 'lose' when inclusivity is undermined in research and public health.
Imagine a classroom where some students have perfect vision, while others struggle to see the board. The teacher notices this and suggests moving some students to the front so they can see better, or gives corrective vision glasses to the students who need them. But then, a few students with perfect eyesight complain, “That’s not fair! Why do they get special treatment?”
Would you agree with them? Is it really giving special treatment? No - it’s ensuring that everyone can see the board clearly. The students with perfect vision were never struggling in the first place, but those who needed glasses were at a disadvantage, through no fault of their own.
This is an example of how Diversity, Equity, and Inclusion (DEI) works. Some groups in society have been denied opportunities and resources for generations, while others have had a clear path to success from the start. Giving support to those who have been left behind isn’t unfair - it’s correcting a system that wasn’t built for them.
Recently, we have been witnessing an alarming assault on scientific and public health institutions - From climate science to public health policy, science should be celebrated, challenged thoughtfully, and built upon — not dismantled.
Recent rollbacks to DEI (diversity, equity and inclusion) initiatives have been seen across corporations, including major changes specifically impacting research. These changes threaten to unravel decades, even centuries, of hard-earned progress.
How is Censorship Impacting Science and Public Health in the US?
Following executive orders in the US targeting DEI, federal bodies and big pharmaceutical corporations are stepping back from their previous efforts to increase diversity in scientific research. Grants designed to support diverse researchers are being cut, as well as grants towards research that considers sex and/or gender. Federal health websites and academic journals are being asked to remove terminologies and entire datasets that include mentions of DEI, or even general mentions of ‘women’, ‘gender’ or ‘transgender’. Such major changes to research records and grant funding has the capacity to endanger not only the health of Americans but also countless lives worldwide, who rely on U.S.-backed research funding and medical advancements, particularly those in underrepresented groups.
The US Food and Drug Administration (FDA) was drafting a guide, due to be finalised by June 2025, for drug and device makers to diversify populations for late-stage clinical trials. This draft would have addressed the lack of diversity in clinical trials and ensured patient safety, efficacy and dosages of certain drugs. This is because many conditions specifically affect certain groups more than others based on sex and/or gender. For example: women are affected by cervical cancer, menopause, endometriosis, premenstrual syndrome, post-partum haemorrhage and maternal hypertensive disorder, not men. Women are also more likely to suffer from stroke, irritable bowel syndrome, urinary tract syndromes, osteoporosis and migraine - yet, historically, women have not always been represented in research relating to these issues.
Ultimately, if clinical trials are not representative of the patients who will be the end-users of the products, healthcare professionals cannot provide the most relevant care for each patient. With a history of underrepresentation in clinical trials, we currently see more adverse side effects from treatments in women than men and this will not improve if underrepresentation in research continues. McKinsey Health institute reported that most drug recalls have occurred because they have higher risks in women than in men.
Lack of representation in trials generates economic costs too. A study funded by the National Institute on Minority Health and Health Disparities showed that racial and ethnic health disparities cost the US economy $451 billion; this translates to decreased years of labour, and therefore a significant loss to the US economy over the following three decades. Thus, a reduction in health disparities through diverse representation in research would be worth billions of dollars in savings to the US.
A collaborative report by the World Economic Forum and McKinsey Health Institute found that closing the women’s health gap could add around 27 million disability-adjusted life years (DALY) annually to women's lives, but also $400 billion to global GDP, not to mention improving the quality of life for women. In addition, women are usually affected by sex-specific health conditions between the ages of 15 and 50 - their working years - impacting their ability to earn and contribute to their family and the economy. Although, given the underreporting and data gaps on women’s health conditions, these statistics could be conservative figures but it does reflect new market opportunities.
Drugmakers have also been facing lawsuits and pressure to scale back, or cancel, their DEI policies due to their reliance on federal funding for a significant share of their sales. For example, Bristol Myers Squibb listed their internal groups for Black, Latino and LGBT employees in their annual report. However, this year diversity only appeared under risk factors and a paragraph that described how they would achieve diverse clinical trials and invest in minority-owned businesses had been deleted. Biogen Inc., removed the phrase ‘diversity, equity and inclusion’ from their annual report, while J&J’s annual report replaced ‘DEI’ with inclusion and belonging.
Censoring research hinders the practice of medicine; research and data are not only academic references, but provide crucial guidance for over 600,000 physicians, directly impacting patient care. Their removal hinders access to accurate, real-time clinical information essential for managing diseases, public health risks, and preventative care in hospitals and clinics nationwide.
More than 3,500 people and 600 local scientific and medical societies, such as Society for Neuroscience (SfN), have published a joint support statement and written letters to call for the removal of this censorship, restoration of access to comprehensive data and to urge protection of vital funding. Moreover, international scientific associations such as Federation of European Neuroscience Societies (FENS) have also issued public statements in support.
"Discriminatory policies targeting diversity, equity and inclusion as well as marginalised and underrepresented groups will also threaten the scientific community. It is a moral obligation to stand up for our colleagues to support their continued inclusion in scientific research."A Statement from the Federation of European Neuroscience Societies & Allies
The Lancet group and The New England Journal of Medicine have confirmed they will not be changing their standards, retracting or correcting articles already published; and any changes to articles prior to publication would only be considered over concerns of scientific validity or integrity.
Ultimately, fairness does not mean treating everyone the same - it means making sure that everyone has the right resources they need to succeed. Science transcends systemic biases; its advancements are for everyone. At WiNUK, we advocate for evidence-based science that accurately represents the diverse populations it serves. Ensuring sex and gender-specific language remains in research is not just about inclusivity. It is essential for scientific accuracy, effective healthcare, and meaningful progress in neuroscience and medicine worldwide.
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This article was written by Peehu Jain and edited by Rebecca Pope and Lizzie English, with graphics produced by Lilly Green. If you enjoyed this article, be the first to be notified about new posts by signing up to become a WiNUK member (top right of this page)! Interested in writing for WiNUK yourself? Contact us through the blog page and the editors will be in touch.
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