Nature Medicine Correspondence

Why banning words in medical research is bad news for everyone

• Manon van Daal, 
• Megan Milota & 
• Karin R. Jongsma 

• 
  

• On 4 February 2025, a list of words was leaked and circulated on various social media platforms that could cause National Science Foundation (NSF) research grants to be pulled when these words are used in their proposals. The list is alarmingly extensive, targeting terms related to gender, diversity, ethnicity, bias and ‘women/female/females’.

  A Nature news article also reported that the NSF is actively flagging research grants that are in violation of US President Donald Trump’s executive orders1. Confirmed internal flags include terms such as ‘broadening participation’, foreign assistance, climate science, domestic energy, and diversity, equity and inclusion (DEI) initiatives1. Trump’s directives aim to eliminate funding for DEI initiatives and remove all references to these terms from federal resources, including grants from the NSF1. However, it remains unclear how the list of words was selected, whether banning of these words serves this purpose and, most pressingly, whether grants that use these words even promote purportedly controversial ideologies to begin with.

  Claiming that certain words are tied to partisan ideologies is misleading; they are essential for ensuring quality healthcare for all. Banning these words is not only a setback for healthcare and medical research but a considerable threat to scientific progress and global wellbeing. The consequences will affect everyone, minoritized and majority groups alike.

  First, a ban will compromise the quality and robustness of scientific research, as it will force scientists to deliberately ignore or elide differences between people and groups to receive federal funding. This will lead to harm and other undesired consequences. Using Plavix as an example — a drug that prevents heart attacks and strokes: researchers failed to account for genetic variations that affect drug metabolism in approximately 30% of Indigenous Hawaiians, which made this drug ineffective for those in this community and led to life-threatening outcomes2. As the Plavix case illustrates, accounting for differences between people and groups in medicine is essential in order to develop effective treatments for all populations. If not, the science produced will be less accurate, less effective, less generalizable and, ultimately, less beneficial to society.

  Second, it is known that a ‘one size fits all’ model of healthcare provision is mistaken. Research into the differences between men and women in heart failure symptoms is just one of many examples3. While the Trump Administration claims to protect women’s lives, banning DEI-related research will disproportionately increase risks for women, particularly those from minoritized groups. A lack of further research into the relevant differences between groups risks underdiagnosis of some and overtreatment of others. Relevant differences, such as gender, skin color or sex hormones, matter for how medicine is done, because these differences affect how signs and symptoms are presented, diseases are experienced, drugs are metabolized and medical devices work. For instance, a pulse oximeter is less effective in people with a darker skin tone because pigmentation and melanin affect the instrument’s ability to accurately measure oxygen saturation4. As a result, people with darker skin tone using a pulse oximeter receive less supplemental oxygen than do white patients, which can have life-threatening consequences, such as hypoxemia4. Relevant differences between people need to be carefully identified, considered and scrutinized to reduce and prevent bias and unnecessary harm in healthcare. Obviously, terminology to describe these differences is essential in conducting this type of research.

  Third, a ban and, therefore, hampering good medical research and care will undermine health equity and make healthcare less cost-effective. A foreseeable consequence is that people from minoritized groups will not have access to the same treatment options as those from majority (for example, white) populations, which will thereby exacerbate health disparities.

  From an ethical standpoint, this disparity leads to unfairness in terms of access to appropriate care and treatment. Such inequities harm minoritized groups, fail to provide care on the basis of individual needs and favor political biases and preferences over evidence-based research. For instance, the abortion ban in the USA disproportionately harms women from minoritized groups, with alarming disparities in maternal mortality rates5. Without adequate terms to describe these in-group and between-group disparities, adequate healthcare provision will be further hampered and meaningful political action will become impossible.

  Furthermore, failing to account for differences between people and groups can result in suboptimal care, ultimately driving up costs within the healthcare system. For instance, a report of the McKinsey Health Institute, in collaboration with the World Economic Forum Centre for Health and Healthcare, showed that closing the gender health gap could reduce the time women spend in poor health by almost two thirds and could add as much as US $1 trillion to the economy annually by 2040 (ref. 6). For every $1 invested in women’s health, about $3 is projected in economic growth6. A Dutch report showed that timely diagnosis and adequate treatment of issues related to endometrioses, menopause, mental health disorders and cardiovascular disease in women could save the Netherlands 7.6 billion € per year7. Refusing to invest in research into relevant differences between groups is thus costly. Wasting these opportunities to provide better and cost-effective care also means a lost opportunity to invest these resources in conducting new research, developing new treatments and other healthcare initiatives.

  Fourth, it is known from the historical exclusion of minoritized groups, including women, that negative effects are long-lasting and hard to counter. Owing to historical wrongdoings, some minoritized groups already mistrust research and healthcare8. Deliberately ignoring differences between people would further erode trust in research, researchers, institutions and the healthcare system. A lack of trust is associated with even lower rates of participation in health research by minoritized groups, which results in lower rates of participation in clinical trials, less-diverse biobank samples and, ultimately, less-effective and less-equitable medical advancements9.

  Banning those words, and therefore hampering good medical research and care, has far-reaching consequences. Good healthcare is based on diversity and should strive to maximize inclusion and equity. This is a call to researchers in and beyond the USA to uphold scientific integrity, advance better science and actively resist this ban. Failing to do so will tarnish the integrity of the entire scientific community, regardless of research focus, interests or expertise. Are we all not implicated in this ban?

  References

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