The CDC wants data on those getting COVID-19 vaccine. Kansas officials are wary.
Kansas officials say they are leery of a mandate from the Centers for Disease Control and Prevention that states must share personal information of individuals vaccinated against COVID-19, arguing it could heighten skepticism of the immunization effort.
The data shared could include names and other identifying information, as well as demographic data, such as age and ethnicity and even potentially the addresses of vaccinated individuals.
Lee Norman, secretary of health and environment, said at a Statehouse news conference Wednesday that the state had not signed the so-called data use agreement with the DCD over concerns that it could complicate public trust.
“We are very reluctant to share that kind of data because we are concerned that sharing identifiable information will decrease the uptake of a vaccine,” Norman said. “Some people are more paranoid about that.”
The state is comfortable sharing information that is de-identified, or cannot be traced back to an individual, Norman said, and he noted it wants "be a part of the process“ in ensuring the vaccine is safe and effective as it gets rolled out.
“We're waiting for more clarity as to how the data and information will be used,” he said.
The push from the CDC would effectively coordinate the data collection efforts of states, who are generally in charge of tracking vaccination information among their residents.
Kansas, for instance, has a immunization database which is usually used to share vaccination records between medical personnel, as well as ensuring those who need to be vaccinated are in fact covered.
But KDHE tracks who can have access to the registry and distributing the information to outside entities must be approved. Users are effectively limited to those who give out vaccines or who need to ascertain if a person is vaccinated.
The CDC has said that data gathered by the federal government will only be used for “work in furtherance of the public health response to COVID-19.” It will not be given out to commercial entities or used for civil or criminal prosecution, for instance.
And, perhaps most critically, the agency says information will not be given to federal immigration authorities, meaning that undocumented residents getting the vaccine would not going to be exposed.
But other states have also pushed back against the plan.
Gov. Andrew Cuomo of New York, for instance, maintained earlier this week that it was an attempt to “extort” information on undocumented residents from the states.
Some other states have questioned whether their own privacy laws even allow them to divulge the data. Colorado, for instance, says they can only legally provide de-identified information to the CDC.
And at a time when scores of Americans say they may refuse a vaccine, there is concern that this could be a simple excuse for individuals not to seek out an immunization.
Federal health officials see it differently.
Guidance given to governors notes that the information will be used for a variety of purposes, including ensuring the second dose of the vaccine is administered properly, tracking any potential side effects and seeing how effective the shot is in different populations.
The CDC emphasized it is “exploring solutions” for shielding the personally identifiable information, while also facilitating data sharing.
But Norman’s concerns have merit, according to Brett Bricker, a professor at the University of Kansas’ Department of Communication Studies who researches vaccination messaging.
The issue has not been helped because it is confusing what data the CDC will be seeking and what it will not, he said.
The potential for suspicion surrounding the data disclosure is especially high for the those who are undocumented. The American Immigration Council estimates there are 75,000 undocumented Kansans, roughly 35% of all immigrants in the state.
“Groups of people who would likely be prioritized as essential workers, such as people who are undocumented, migrant farmworkers, food processing plant workers, etc., may be most apprehensive about sharing their information,” a group of public health officials wrote to the CDC in expressing apprehension about the data sharing plan.
That population is often hesitant to engage with local, state and federal authorities anyway, experts say.
And communities of color were already a top priority for government entities in rolling out Kansas vaccine distribution plan. The data sharing could complicate that outreach.
“Despite anybody’s political beliefs about this point, that fear is real and it exists,” Bricker said. “If they want this vaccine to reach the population, they were already going to have to do a lot to build confidence and overcome trust barriers and this is just fuel to the fire.”
Bricker noted that policymakers may come up with a solution if it becomes clear that certain populations are not becoming vaccinated, such as setting up a clinic where no information is shared.
He noted that the purposes states by the CDC were “entirely legitimate.”
“I just don’t really know that that purpose is persuasive to people who think that their livelihood might be put at risk by providing this information,” Bricker added.