CDC, and Others, in Crisis
Defending Women from Gender Ideology Extremism and Restoring Biological Truth to the Federal Government
At JPM, we encountered a lot of organizations who were uncertain about what to expect from a regulatory perspective with the change in administration. While there may be some benefits in terms of deregulation, there is also concern from a patient care angle. As researchers who greatly value science and data, we have been monitoring the impacts of the latest executive order, “Defending Women From Gender Ideology Extremism And Restoring Biological Truth To The Federal Government” and what that means to guidance around population studies, minority communities, and clinical trials. We are extremely concerned at what has been emerging and will highlight two instances.
The CDC and Data Censorship
Despite a recent court ruling allowing for the return of some websites impacted by the “Defending Women from Gender Ideology…” executive order, many critical guidelines and datasets are no longer available.
Since then, data regarding sexual assaults, rape, LGBTQ, domestic abuse and violence, and even mpox vaccinations have disappeared or been altered as websites.
Image: from the CDC website.
The disappearance of sexual assault statistics does not “defend women” from gender ideology. Nearly 99% of perpetrators of sexual assault and rape are men in the U.S. Some websites have returned, but not necessarily in the same format as before.
There are several data preservation initiatives that aim to combat this censorship. Here are two we have been tracking and can recommend:
FDA and Guidances
KAMI Think Tank does a significant amount of research into Responsible AI practices in the life sciences. That includes staying up to date on the latest guidance for data used in clinical trials, as this should be applied to alignment work done with AI model development. However, the following scientifically incorrect statement is now pasted strongly above the guidelines which had been temporarily removed prior to the most recent court order.
Image: From the FDA website guidance on “Diversity Plans to Improve Enrollment of Participants From Underrepresented Racial and Ethnic Populations in Clinical Trials“.
As scientists, we at KAMI Think Tank encourage following the fidelity of the original guidance prior to the executive order in both cases. These versions have been vetted by scientists and healthcare and life sciences industry experts across multiple organizations. We will also be integrating these original guidelines into our recommendations of AI model development, and we also encourage the exploration of tools that help increase representation in clinical trials, such as Trial Library and more.
It is critical to mitigate bias in patient care to ensure treatments and therapies are available to all. “Primum non nocere” (above all else, do no harm) - this is the true policy life science and medical professionals should follow, and not one where the whims of an administration puts millions in the path of harm.
