The National Institutes of Health is moving to prohibit scientists from collecting data about gender, according to a draft policy obtained by The Chronicle, as part of President Trump’s order to end federal recognition of transgender people and others who identify as a gender that doesn’t align with their sex assigned at birth.
The proposed rule comes as the NIH is systematizing its aggressive crackdown on the study of gender identity, which includes canceling grants and closing an office dedicated to the topic. It was submitted for final edits and approval last week at the NIH, according to a person familiar with the matter, but had not been released as of Tuesday afternoon.
Gender and sex are not interchangeable. Failing to measure both means missing vital information, jeopardizing the accuracy and equity of our scientific findings.
Researchers inside and outside the agency “shall not use NIH funds to request, collect, or disseminate information related to gender,” states the version of the policy seen by The Chronicle, which could change. However, data on sex can be gathered — provided that the used definitions of sex reflect the Trump administration’s view that there are only two sexes, female and male, and they are determined at birth and unchangeable. That view was articulated in the president’s Executive Order 14168, “Defending Women From Gender Ideology Extremism and Restoring Biological Truth to the Federal Government.”
“If NIH restricts the collection of gender data, it will limit our ability to conduct rigorous, representative research,” said Brittany Charlton, an associate professor at Harvard Medical School and founding director of the LGBTQ Health Center of Excellence. “Gender and sex are not interchangeable. Failing to measure both means missing vital information, jeopardizing the accuracy and equity of our scientific findings.”
Asked for comment, an NIH spokesperson said in a statement: “It is common for policy proposals to be developed and circulated as pre-deliberative information for additional input prior to finalization or NIH leadership review. Unless officially announced by NIH, discussion about future agency action should be regarded as pure rumors and speculation.”
Historically, federal research, health, and survey efforts have used sex terms and gender terms interchangeably, and treated them as binary: Men are male, and women are female. But over the last decade, the U.S. government took steps to broaden its approach.
The binary view “masks a more complicated reality” for transgender, intersex, and nonbinary people, states a 2022 report from the National Academies of Sciences, Engineering, and Medicine. People with gender identities that differ from their gender assigned at birth or that fall outside the male/female binary, or who have sex traits that don’t necessarily correspond to the same sex, may not receive appropriate and needed health care as a result of being overlooked, the report states. Compiled by a panel of experts who specialize in surveying and studying sexual and gender minorities, the document recommends that gender identity, not biological sex, be the default data that is collected and reported by the NIH.
Tara Becker, study director of the report and a senior research associate at the University of California at Los Angeles’ Center for Health Policy Research, said in an email that the concept of gender encompasses “the ways in which an individual forms their identity as a person and their role in society,” as well as “the social expectations that are placed on them and the penalties they face when they do not conform to these expectations.”
“The effects of gender vary across societies and are distinct from the effects of sex,” Becker said. “Conflating them with sex risks ascribing all differences between men and women to biological differences rather than differences in social investment and expectations.” Becker added that she was not speaking on behalf of the National Academies or of UCLA.
Federally sponsored national surveys had started to collect data about both traits since 2016, according to the National Academies report. In 2015, the NIH’s Sexual and Gender Minority Office was started to coordinate research on those populations across the agency.
But after Trump was elected to a second term, that office’s website was taken down, and its employees reportedly reassigned and put on indefinite administrative leave. This year, the NIH has terminated more than 1,000 grants on LGBTQ health, according to the volunteer-run database Grant Witness. The NIH has said that gender-identity-based research efforts are “often unscientific, have little identifiable return on investment, and do nothing to enhance the health of many Americans.” (Some of those cancellations have been reversed following legal action.) The agency is also requiring a number of grantees to pledge compliance with Trump’s anti-transgender executive order, whether or not their work involves LGBT issues.
Since Trump signed Executive Order 14168 on his first day in office, his administration has blocked or sought to block transgender people from receiving gender-affirming medical care, serving in the military, updating their passports to reflect their gender identity, and, in the case of transgender women of all ages, from competing in girls’ and women’s sports.
According to the new draft policy, the NIH is aware that federal courts in Washington and Maryland have issued preliminary injunctions that block the federal government from carrying out aspects of the executive order.
The draft says that NIH funds may be used to collect information in response to questions about sex “to include information such as ‘unknown’ or ‘don’t know.’” Its prohibition will apply to studies that are ongoing or initiated after it takes effect, it says.
As currently written, the prohibition extends to submitting gender data to publicly available databases, including a federal database of clinical trials, unless required by law. Information submitted to such databases before the policy takes effect can still be displayed, according to the document. The draft also says that “database or repository guides for users, metadata, and other information provided by the database or repository related to historical data may be versioned, retained, and continue to be made publicly available.”
The draft policy allows for exceptions. Gender data can be collected “when scientifically justified” — which the document does not define — and in response to specific funding opportunities posted by the NIH. For internal NIH research, such data collection must also be approved by the principal deputy director. The document also says that gender information can be provided to publicly available databases in the cases of “qualifying studies.”
