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CDC officials want to use personal data to keep track of the effectiveness and side effects of COVID-19 vaccines. Mark Lennihan/Getty Images
  • Officials at the Centers for Disease Control and Prevention (CDC) are asking state and local officials to provide them with personal data on people who get the COVID-19 vaccine.
  • CDC officials want the information to keep track of the effectiveness as well as any side effects of the vaccines.
  • Some experts have expressed concerns over the use of this private health data and said undocumented immigrants might be reluctant to get vaccinated due to the CDC request.

COVID-19 vaccines are beginning to roll out across the United States, promising the beginning of the end to a pandemic that has led to the deaths of more than 300,000 people in the country.

But along with those vaccines comes a request from the Centers for Disease Control and Prevention (CDC).

Agency officials are asking for the names, birthdates, addresses, and ethnicities of people who’ve received the vaccine.

The information is part of the CDC’s data use and sharing agreement.

Though this sort of practice is not unheard of, it’s causing concerns among state and municipal leaders about federal overreach and how this data will be used.

“The creation of a new federal database with personal information about tens of millions of Americans, if not hundreds of millions of Americans, is almost always a sensitive subject,” said Kevin Coy, an IAPP privacy law specialist at the Arnall Golden Gregory LLP law firm in Washington, D.C.

“This is especially true where health information is involved,” Coy said. “While recognizing the importance of a national approach to the response to COVID, there are concerns about sharing data that traditionally has been maintained primarily at the state level as well as concerns that federal guidance on how the data is to be transmitted has been insufficient.”

Leaders such as New York Gov. Andrew Cuomo have found the CDC’s lack of complete assurance about how personal data will be shared with federal agencies insufficient. Cuomo also noted the Trump administration’s hostility toward undocumented immigrants.

“The data use agreement says that the information will be used by, and I quote, CDC, HHS, and ‘other federal partners,’” Cuomo said at a press conference. “Now, I have been down this road before. This is an administration that has, from day one, with the wall, been relentless in their pursuit of undocumented people.”

“This is just another example of them trying to extort the state of New York to get information that they can use at the Department of Homeland Security and ICE that they’ll use to deport people,” Cuomo said. “That is what this is. I will not do it.”

This isn’t the first time that the CDC has requested information of this kind, although it’s not common practice.

“Essentially, they are equating the need to get a coronavirus vaccine with the same sort of public health risk you find with something like tuberculosis (TB),” Dr. Ann H. Messer, a family medicine physician and medical director for vaccine delivery at a pharmacy in Austin, Texas, told Healthline.

“TB is a ‘reportable illness’ and so anybody who gets that illness must have their personal information — including their name age, and address — turned over to the government so that the government can ensure that that person gets appropriate treatment,” Messer said. “This happens because TB is so very contagious and can be deadly, so public health issues take precedence over HIPPA privacy issues.”

“The government is citing that same privilege/responsibility with the delivery of the COVID-19 vaccines,” she said.

Concerns about the potential misuse of this data by other federal agencies are not without merit, said Juan D. Reyes, assistant vice president of risk management and a compliance/privacy officer at Community Health of South Florida Inc., which serves a large population of undocumented immigrants.

On the one hand, the CDC isn’t asking for immigration status information when people get the vaccine. However, trust could still be an issue.

“There remains the concern that undocumented folks who fear that this information related to the COVID vaccines is going to be given to immigration officials may not seek treatment or the vaccine when they should,” Reyes said. “And if they do contract the virus and don’t get care and guidance, [they] may end up spreading it further, in which case these reporting guidelines may actually work against the good of our public health.”

Reyes also noted that undocumented immigrants tend to get information anecdotally about whether getting health care is going to lead to notification to immigration — and not from official channels.

“At the end of the day, we have a duty to treat all patients,” he said. “That is our mission, and for us, that extends to treating the underserved population of which the undocumented are a part.”

These data-sharing requirements walk a fine but potentially necessary line between balancing peoples’ private data and the need to have comprehensive data tracking amid a pandemic, some experts argue.

“Sharing personal data is always a compromise, but in the case of helping to curb the spread of the virus, the question really becomes whether public health is more or less important than privacy for this level of personal information,” said Tendü Yogurtçu, PhD, chief technology officer at Precisely, a data management company.

“It will be critical to track who has been vaccinated, doses, and any adverse effects of the immunization since the vaccines are still in development and are being developed in an aggressive timeline,” she said.

“This [data sharing] will help develop a deeper understanding of how the vaccine effort is progressing,” Yogurtçu said. “The completeness, accuracy, and consistency of this data will be critical at a national level.”

While these requirements may give some individuals pause, others are fine with the data sharing.

“It’s fine with me,” Addison Coley, a 26-year-old Minneapolis resident, told Healthline. “The feds already have all this info on me from the census and if collecting demographic info is helpful for ensuring equitable distribution of a vaccine – that’s a good thing in my book.”