Will sharing personal info discourage Americans from getting Covid-19 vaccine? States refuse to give data to CDC
The US Centers for Disease Control and Prevention (CDC) is asking states to provide personal information of Americans receiving the coronavirus vaccine, once it is authorized. This has raised concerns, with some states pushing back on the request stating that the data could be misused or it could lead to a lack of trust and discourage people from getting a Covid-19 vaccine.
The data use and sharing agreement (DUA) notes that the CDC and the US Department of Health & Human Services (HHS) is requesting the data to ensure comprehensive monitoring of vaccine administration. “This dataset, which will reside in the data clearinghouse (DCH), contains identifiable data elements and is being requested for specific purposes, including to assess and verify second-dose vaccination, to assess vaccine safety, and to allow for critical vaccine effectiveness monitoring,” reads the document.
The agency says that neither HHS nor CDC will have access to or release such identifiable data, “including but not limited to names and other identifying information of persons who are the subject of such data, either during the term of this DUA or longer, except as consistent with this DUA or as may be allowed or required by applicable law.”
The data requirements are detailed in the CDC’s Covid-19 vaccination program interim playbook, which was published on October 29. It calls for the recipient’s race, ethnicity, address, date of birth, name, and sex, among others.
According to New York Governor Andrew Cuomo, collecting personal data could dissuade undocumented people from getting vaccinated against coronavirus. “The federal government requires that a data-sharing agreement be executed by state governments before commencing the vaccination program. The current agreement provided by the federal government requires identification of each person who is vaccinated - the federal government suggests that states use social security numbers, driver’s license identification numbers, or passport numbers to fulfill this requirement. This provision obviously raises concerns, as the proposed criteria are all proxies for proof of citizenship,” says a letter issued by Cuomo to HHS Secretary Alex Azar on December 1.
The governor emphasizes that the concern is exacerbated by an additional federal provision in the agreement specifically providing that the information could be shared with other federal agencies, that is the Department of Homeland Security and Immigration and Customs Enforcement (ICE). “If undocumented Americans are dissuaded from participating in the vaccination program, it would jeopardize both their health and the efficacy of the entire vaccination program,” the letter explains.
Cuomo also told the New York Times (NYT) that it is “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.”
The New York State has proposed two clarifications or modifications to address the issue. The proposed modified system would protect residents’ personal information and help ensure confidence in the vaccine and its distribution program, says Cuomo.
“New York will provide an identification system to effectively track vaccinated individuals and the required dosages that do not identify to the federal government an individual’s social security number, passport number, or driver’s license number. The state will provide aggregate data. In addition, the federal government must agree to keep vaccination identification information private as with any other health matter, and agree not to share it with any non-health agency for any other purpose,” suggests the letter.
Deacon Maddox, who runs the data and analysis system of Operation Warp Speed, however, argues that social security number is not being asked for. “There is no driver’s license number. The only number I would say that is asked is the date of birth,” notes the official.
The advisory panel of the US Food and Drug Administration (FDA) is meeting on December 10 to discuss the emergency use authorization application of Pfizer’s two-dose vaccine candidate.
In October itself, the National Governors Association, chaired by Cuomo, had sent a list of questions to the Trump administration seeking clarity on how to most effectively distribute and administer a Covid-19 vaccine. One of the questions raised was whether the federal government was going to request that states report personally identifiable Covid-19 vaccine data. “We have concerns that this may create a lack of trust and discourage people from getting vaccinated,” they had warned.
Addressing the concerns, an HHS document elaborates that to accurately and effectively track the administration of the coronavirus vaccine from several data sources, including jurisdiction immunization information systems, it is necessary to collect personally identifiable data from vaccine recipients. “This is critically necessary to ensure matching the correct second dose to the correct patient, ensuring that both dose number and product are consistent with eventual guidance from the ACIP (Advisory Committee on Immunization Practices), creating an accurate accounting of administration of vaccines being reported by multiple sources of data, identifying vaccine and patient information in the event of adverse events to address safety issues, and assessing the effectiveness of the vaccine among different demographic groups within the population,” it explains.
The HHS document states that it was “exploring solutions” to protect privacy. “Identifiable data will not be available to CDC or other federal agencies for programmatic use and will only be used to track and reconcile Covid-19 vaccine administration data from disparate data sources. CDC is exploring solutions that allow information exchange on vaccine administration,” it notes.
Minnesota, meanwhile, is also against the initiative. It has refused to report identifying details to the CDC, and will only submit “de-identified doses administered data.” “This is a new activity for us, as we don’t typically report this level of detail on this frequency to the federal government. We will not be reporting name, ZIP code, race, ethnicity, or address,” Doug Schultz, a spokesman for the Minnesota Department of Health, tells NYT.