Researchers and journalists are raising alarms about changes to federal health data. A recent study shows that many datasets were altered without proper notice, which raises questions about transparency.
The research looked at over 200 federal datasets from early this year. Nearly half had changes, most notably swapping the term “gender” for “sex.” Shockingly, only 15 of the updated datasets mentioned these changes.
Janet Freilich, a professor at Boston University and co-author of the study, expressed concern. “The lack of transparency is alarming,” she said. The study, published in The Lancet, highlighted that modifications were made across various agencies, including the CDC and the Department of Veterans Affairs. Interestingly, these changes align with a presidential directive issued in January to standardize language around sex and gender.
Freilich pointed out the potential harm of these changes. “If researchers rely on changed terms, they may draw incorrect conclusions,” she explained. “More importantly, it damages trust in federal data.”
In a related paper, Freilich and her colleagues found that between January and February, the CDC removed over 200 databases from its website. Freilich fears many of these datasets won’t return. “I just plead for transparency,” she said.
Michelle Kaufman, a public health expert at Johns Hopkins, emphasized that this isn’t just about data removal. The actual modifications complicate research. “Students should seek data from non-government sources,” she advised.
When examining how terms like “gender” and “sex” are used in research, it’s crucial to differentiate the two. “Sex” often refers to biological attributes, while “gender” signifies social roles. Kaufman notes that conflating them can distort findings, especially regarding health outcomes. “Using ‘sex’ could mask the complexities of gender’s role in health,” she said.
Freilich and her team called for better transparency and independent archiving to protect data integrity.
For anyone interested in accessing archived datasets, various organizations are stepping up. The Data Rescue Project, for instance, aims to preserve at-risk public information. Smaller initiatives, like the Federal Environmental Web Tracker, monitor changes across government sites.
Given these issues, it’s essential to explore various data sources. Relying solely on government data could lead to incomplete or inaccurate conclusions.
As we navigate these changes, let’s prioritize transparency and reliability in public health data. The conversation around these shifts in terminology is just beginning.
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