State officials express privacy concerns over CDC's call for COVID-19 vaccine data registry 

Some state officials have expressed privacy concerns over the Trump administration's requirement to have states submit personally identifiable health information of people who receive COVID-19 vaccines to the federal government, according to a Dec. 8 New York Times report. 

Eight details: 

1. The CDC is instructing states to sign data use agreements that for the first time commit them to sharing personal data, including names, birth dates, addresses and ethnicities, with the federal government. 

2. States including New York and Minnesota are pushing back against the initiative, with New York either refusing to sign the agreement or signing while refusing to share the information and Minnesota refusing to report identifying details to the CDC. Minnesota will submit only de-identified doses administered data. 

3. The information submitted to the CDC will not be shared with other federal agencies and is needed for several reasons, including ensuring people who move across state lines receive their follow-up doses and to track adverse reactions and respond to safety issues, according to administration officials, the Times reports. 

4. New York Gov. Andrew Cuomo said that collecting personal data could dissuade undocumented people from getting vaccinated and called the CDC's initiative another example of the administration "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."

5. Collecting immunization data in the U.S. has been a state-by-state effort; two decades ago, there was a push to develop a federal registry that imploded after widespread backlash and concerns over patient privacy and how the data would be used. 

6. Shaun Grannis, MD, medical informatics professor at Indiana University, who has also advised the CDC on data gathering, told the Times that "the general philosophy in this country is states manage public health, so the concept that federally we are going to be tracking identified information is concerning."

7. The CDC is not yet using a system to encrypt personally identifiable data, and department officials did not respond to the Times' requests for comment. 

8. Operation Warp Speed officials on Dec. 7 said that "all but a handful" of states had signed the data agreements and the remaining states would sign by the end of the week. However, it is unclear how many states will report personal information. 


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