Tim Tai

The Centers for Disease Control and Prevention, or CDC’s, web page on the “Policy for Inclusion of Women and Racial and Ethnic Minorities in Research” is gone. References to unconscious bias on the CDC website have disappeared. The CDC “Office of Equal Employment Opportunity and Workplace Equity” has been renamed to remove the word “equity.”

This month, per President Donald Trump’s executive orders, the CDC is trying to eliminate any association with diversity, equity and inclusion, or DEI, on its website. The scrubbing of data — which includes topics like gender and racial identity and accessibility — has led to the disappearance of various CDC web pages that feature keywords such as “disability” and “women.” This data loss raises concerns — it not only prevents researchers from providing more accurate analyses and medical information, but it could also have widespread negative impacts on public health. 

“The first step to understanding the health challenges that the public faces is to be able to study and understand some of the social determinants of health,” Michael Capello, department chair of epidemiology at the School of Public Health, said. “So for the government to attempt to scrub information about some of the various populations within our society is in itself an effort to further marginalize some of the more vulnerable populations in our country. And that is an incredibly regressive decision on the part of our government.”

The CDC’s shift on DEI

According to Mayur Desai SPH ’94 GRD ’97, the associate dean for DEI at the School of Public Health, the CDC is the premier public health organization in the U.S. and one of the key agencies in the Department of Health and Human Services. One of the main tasks of the CDC is to collect various data sets about the nation’s health, ranging from the Nutrition Examination Survey to the Health Interview Survey. The CDC usually collaborates with local health departments and universities to collect the data, but they also have their own scientists who conduct research.

Researchers and medical professionals look to the CDC for data about epidemiology, patient outcomes, health disparities and more. Desai points out that the data collected is funded by taxpayer dollars to benefit the American people’s health and is meant to be freely accessible to any researcher around the world.

“The information and data that is present on the CDC is something a lot of us access on a regular basis,” Sona Jasani, assistant professor of OBGYN at the School of Medicine, told the News. “For example, the best guidance for treating certain infections, like STD (sexually transmitted diseases) management. When a patient comes in and tests positive for something, you can just look at the CDC and point to the recommended guidance for a certain patient population.”

However, the CDC recently decided to limit DEI influence in their data due to the Trump administration’s pushback on DEI. This decision has led to websites like the Agency for Toxic Substances and Disease Registry’s Social Vulnerability Index vanishing. It has led to the replacement of words on the website and CDC-funded research data like “gender” to “sex.” It has led to the removal of complete sentences, courses and articles that have to do with equity or diversity. It has even led to the removal of the CDC mission on the website, at least temporarily. 

Federal judge overturns CDC decision

Although a federal judge ordered the CDC to reverse its actions on Tuesday, some of the websites with DEI content are still down and accessing the data is difficult. Jasani told the News that it takes her longer than usual to pull up data, as she had to go to different parts of the website to find information; at times the data won’t download properly. In addition, the CDC states that the website is being modified to comply with Trump’s executive orders, with many sentences and words still not being restored. 

“These observations seem to suggest that ‘restoration’ may not mean complete restoration,” Jasani wrote to the News. “It may mean that some of the words including ‘gender’ or DEI information may not be restored despite the federal court order. The lack of transparency for an end-user like myself to know what will and will not be restored is somewhat alarming and frustrating.” 

What makes the situation more complicated for researchers and medical professionals is the general uncertainty; many do not know what else will constitute the CDC’s response to Trump’s executive orders and whether or not they’ll be struck down. 

Capello believes the CDC’s next steps are uncertain because of the lack of clarity on the ultimate intention of the CDC’s actions. 

“It’s a very unsteady and uncertain moment in which we’re trying to grapple with these changes that are made, and then, in some cases, within hours today are reversed,” Capello told the News. “I think that’s a very important point for people to understand that uncertainty makes it extremely challenging for my colleagues in the School of Public Health and the School of Medicine to be able to do their work when they are reliant on publicly available databases.”

According to Capello, the restriction of the availability of public health data is not new; the political implications of HIV/AIDs in the late 1900s and firearm injury and death in the 2010s made published data not as clear. However, this is the first time that general health information, like the rates of influenza and rates of cancer, is being restricted as data on certain sectors of society are being reworded. To Capello, this doesn’t seem rational.

Desai told the News that he wasn’t surprised about the Trump administration’s actions as he made clear on the campaign trail what his priorities were; however, the speed by which these changes are taking place is what shocks him.

“I think there’s an effort on the part of the administration to look past these inequities,” Desai said. “For them to negate their existence.”

The impact of the CDC’s actions

According to Jasani, the most comprehensive data set is one that’s routinely updated and represents diverse groups. With 80 percent of health outcomes associated with the social determinants of health of where one lives, eats, learns and works, medical factors can impact different groups differently because people live in different environments. 

For example, structural racism plays a role in health outcomes for people of color as black women face higher rates of maternal mortality than white women. It was by recognizing the differences between demographics that researchers realized that some biological instruments like pulse oximeters measure oxygen saturation levels differently across various skin tones. Removing data on these social differences can lead to drastic deficiencies in addressing health.

This lack of data doesn’t only affect minority groups, it has the potential to impact everyone.

“The COVID-19 pandemic and other infectious disease outbreaks that have occurred should make us all understand that what affects the health of one of us has the potential to affect the health of all of us,” Capello said. “It’s less about sort of targeting specific groups, then this broad-based effort to limit the flow of information and the potential it has to harm all of us.”

According to Capello, the impact CDC data scrubbing has on society is boundless. The New Haven Health Department relies on federally provided health data to inform policies that address public health issues and disparities. Without accurate data, it’ll be more difficult to enact impactful interventions that promote the health of New Haven residents. 

“If we don’t have reliable research based on current and accurate data, we can’t develop policies that can target particular groups to improve their health, whether that group is a particular marginalized group, a racial or ethnic group, or the health of the entire country,” Capello said. “Policy can only be based on well collected, accurate, up to date and reliably analyzed data.”

To Jasani, science is about discovering the truth, and the scientific process is meant to reduce as much bias as possible during data collection and analysis. The introduction of bias in the form of data revokement can result in skewed, inaccurate and biased conclusions of public health situations.

Capello believes that the CDC’s actions erode the agency’s credibility; it will be harder for public health professionals to trust the data the CDC produces because of the uncertainty it has “injected” into its data. Even with some of the data being restored back to the website, Jasani is now worried about the issue of accountability in the CDC for it’s still unclear who will make sure that the revoked information is being restored.

Rebuilding lost data

In response to the growing threat of the loss of data, a number of academic and nonprofit organizations are recreating removed data sets based on archived websites. According to Jasani, the American College of Obstetricians and Gynecologists provided some resources on CDC information; the Internet Archive also provided some data archived from the CDC website.

However, these second-hand websites aren’t as transparent, accessible or user-friendly when trying to utilize such data. Websites host disorganized data entries that make it difficult to find exactly what one is looking for in a timely manner. Jasani suggests that, at times, relying on data from the state and city governments or local institutions could actually provide more accurate data on local issues than federal data. This could potentially reduce the impact of the CDC’s actions

“Sometimes the most accurate data is either your local data, or your institutional data, depending on what the topic that you’re studying is,” Jasani said. “I would hope that some of these other data sets that we have here, locally or state-based, haven’t been affected. However, not every location in the United States can say that with certainty.”

According to Desai, the School of Public Health’s message to faculty is to continue to link science and society, helping to improve the health of the masses. He believes that it’s even more important that the school continue to do its vital work and be a trusted voice in public health. 

Jasani believes that Yale should work to optimize their own data collection, making sure its data collection process and results are accessible and transparent to everyone, including the patient. 

Capello points out that one of the things that patients, agencies and the general public can do to push for change is to contact elected representatives, especially in Republican districts, to let them know how the CDC’s actions can impact general health. Pressuring members of Congress to advocate for stronger public health policies and increased transparency in data reporting can help ensure that agencies like the CDC remain accountable.

The CDC was founded in 1946.