COVID vaccine rollout raises data privacy questions in California

As California prepares to administer its first doses of the much-anticipated COVID-19 vaccine, some experts and officials worry the federal government is asking for too much information about people who get immunized.

To support the national rollout of the new coronavirus vaccines, the Centers for Disease Control and Prevention is asking states to sign a “data use and sharing agreement” that allows the federal government access to personally identifiable information about people being vaccinated, such as names and addresses.

California has joined other states in saying it will not provide that identifying information, a move applauded by privacy and immigrant rights advocates. But experts say the debate highlights the tension between the conflicting desire to protect people’s information, and the critical need to track how well the vaccine works.

“One always has concerns about sharing any data in this era that we’re living in. That said, it’s critical that we get the best data that we can about these vaccines,” said Dr. John Swartzberg, a clinical professor emeritus of infectious diseases and vaccinology at the UC Berkeley-UCSF Joint Medical Program. “And so a sweet spot has to be found between protecting the individual and making certain we have adequate data to make the proper assessments about how the vaccines are working and their side effects.”

Otherwise, he cautioned, people leery of handing over personal information to the federal government — including undocumented immigrants — may decline to get vaccinated, potentially jeopardizing the program’s success and efforts to control the virus.

To the relief of residents weary of lockdowns and social distancing, California is expected to receive 327,000 doses of the Pfizer vaccine by Dec. 15, and another 600,000 to 700,000 doses of the Moderna vaccine the following week. Healthcare workers and people living in nursing homes and other live-in facilities will be first in line for those doses.

The CDC has asked states to submit identifiable data — such as names and addresses — of people getting vaccinated, so the government can verify people are taking both vaccine doses, and assess the safety and effectiveness of the shots. But in California, that’s not happening. Only “de-identified data” will be shared with the federal government, Dr. Robert Schechter, chief of the state health department’s immunization branch, said earlier this week during a meeting of the state’s community working group on vaccines.

In an emailed statement, a representative of the California Department of Public Health said the state agency has entered into a data-use agreement with the CDC that protects vaccine participants’ identities. The state agency said in addition to withholding names and addresses, it would also limit demographic data in some cases, to protect participants’ identity. The agency did not provide further details on exactly what information would be shared.

During the meeting, Jacob Snow of the American Civil Liberties Union of Northern California, called Schechter’s promise “very good news.”

“California can and should protect the health and safety of its communities by ensuring that any personal information gathered as part of the vaccine distribution is only used for public health, and is not needlessly shared with other agencies, including the CDC,” Snow, a technology and civil liberties attorney, wrote in a statement. “We encourage the Governor and the Department of Public Health to formally commit to ensuring that when people receive the vaccine, their private information will be handled securely and with care.”

The CDC and the U.S. Department of Health and Human Services did not respond to requests for comment. But White House spokesman Michael Bars told The New York Times that information gathered from states’ vaccine programs would be used only to support national efforts to combat coronavirus.

New York Gov. Andrew Cuomo and dozens of other groups also pushed back against the CDC’s data demands, arguing that information could be shared with federal immigration officials and put New York’s undocumented residents at risk. This week, the governor’s office announced an agreement with the CDC that allows New York to refrain from sending data that could be used to document someone’s immigration status.

There are similar concerns in California, which has a large population of undocumented immigrants, and where officials have a tendency to distrust President Donald Trump’s administration.

“I’m very concerned about whether it will scare people away, or whether it will be too invasive or not,” said Santa Clara County Executive Jeff Smith.

The Board of Supervisors plans to discuss the issue at its meeting next week.

The CDC’s data agreement is unusual — when states work with the federal government on national health initiatives, typically they send aggregate or anonymized data, said Dr. Shaun Grannis, vice president for data and analytics at the Regenstrief Institute, a research organization based in Indianapolis, Ind. Grannis, who has advised the CDC on data gathering in the past, can’t see why in this case the agency would need patients’ identifiable information.

Under the data-sharing agreement, it’s also unclear which agencies would have access to what data, and whether the data would be encrypted, he said.

Even so, Grannis assumes the federal government is following best security practices, and therefore the risk of a hack is low. The agreement seems to mandate that data collected by the CDC is to be used for immunization administration purposes only — meaning it shouldn’t be shared with other agencies like Immigration and Customs Enforcement.

But the key is getting people to believe that, and take the vaccine. And for that to happen, there needs to be more transparency about how people’s data will be collected and used, Grannis said.

To Swartzberg, the privacy concerns illustrate how rushed the COVID immunization program has been.

“We ought not to be having this discussion on the eve of rolling out the vaccine,” he said. “This discussion should have been had well before this.”

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