CDC Right to Withhold COVID Data to Prevent Misinformation, Scientists Say

The U.S. Centers for Disease Control and Prevention (CDC) has made headlines this week after a report highlighted that it does not always publish all the COVID data it collects from states.

Throughout the pandemic, the federal health agency has undertaken the huge task of collecting data such as hospitalizations from COVID in the country and broken it down by age, race, and vaccination status. However, it has not made most of this information public, The New York Times reported last Sunday.

One particular dataset that had not been made public related to the effectiveness of booster vaccines in 18- to 49-year-olds, which is the group least likely to benefit from them, according to the paper. That data was later published after multiple inquiries.

Jessica Malaty Rivera, an epidemiologist and science communication lead at The Pandemic Tracking Collective, criticized the CDC. "We have been begging for that sort of granularity of data for two years," she told The New York Times, referring to omitted datasets.

A CDC spokeswoman told the paper that the agency's priority when gathering data is to "ensure that it's accurate and actionable" and that some datasets are not released because they're not ready.

Multiple outside experts have told Newsweek that it is important for the CDC to ensure that the data it collects is complete, interpreted, and properly representative of reality before it's published—otherwise it risks breeding misinformation.

Kenneth W. Goodman, director of the Institute for Bioethics and Health Policy at the University of Miami Miller School of Medicine, told Newsweek: "The CDC is in a tight spot, shaped by this question: Is it better to share what you have, knowing it to be incomplete—and hence a possible source of misunderstanding or mistakes—or wait until you have higher confidence?

"What the CDC can't say easily and publicly is that it has the job of collecting and analyzing data from 50 different and in many ways autonomous jurisdictions, and many of them simply do not collect useful data and, if they do, some willfully and intentionally do not share it."

The point was echoed by Diana Cervantes, director of the MPH Epidemiology Program at the University of North Texas Health Science Center at Fort Worth. She told Newsweek that the CDC needs to be transparent and it is best to provide available data—as long as it is clearly interpreted.

"Not providing an interpretation of the data will definitely lead and has led to misinterpretation of data," she said. "Any organization that collects, analyzes, and intends to disseminate information should never forget to interpret the data clearly and for the audience it is intended for."

This process is not a fast one. Indeed, data "cleaning" can take months or even years, explained Maureen Lichtveld, dean of the University of Pittsburgh School of Public Health. The problem is that crisis communication cannot wait for that.

"The Centers for Disease Control and Prevention can only be as effective as the data it receives from states and counties," added Beth Blauer, associate vice provost for public sector innovation at Johns Hopkins University. "And throughout the pandemic no two state and local health agencies collected, labeled and released data in the same manner or at the same intervals. Building a new airplane while it is in flight and on fire is impossible."

None of this is to say there is not room for improvement. Blauer called on Congress and the White House to accelerate the already aggressive modernization process of the CDC in anticipation of some future virus that could emerge.

Ultimately, the CDC has to strike the right balance between holding information it believes is not 100 percent complete and being fully transparent with it.

While incomplete data can lead to misinformation, so can a lack of it, said Janet Baseman, associate dean for public health practice at the University of Washington School of Public Health. She told Newsweek: "If quality and timely data are withheld from the public on a topic of high relevance to public health policy-making and individual-level risk assessment, there is a risk of further compromising the credibility of public health during an already challenging communication environment."

For Rivera, sharing the data with proper caveats and communication is better than having glaring vacuums in public datasets, she told The New York Times.

Earlier this year it was reported that public trust in COVID information given out by the CDC had fallen in January, based on a poll of 1,656 adults.

Rochelle Walensky
CDC director Rochelle Walensky testifies at a budget hearing in Washington, D.C., in May, 2021. The CDC has been accused of withholding some COVID data. Jim Lo Scalzo/Pool/Getty