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CDC call for vaccine recipient data raises privacy alarm

In the United States, the collection of immunization data has been a purely state-by-state effort. A push two decades ago to develop a federal registry imploded after an uproar over patient privacy and how the data would be used.

“The general philosophy in this country is that states manage public health, so the concept that we’re going to track information identified at the federal level is concerning,” said Dr. Shaun J. Grannis, professor of medical informatics at the ‘Indiana University, which advised the CDC on data collection.

“We are 50 different states with a patchwork of regulations and different perspectives on privacy and security,” added Dr Grannis. “And I think people are going to ask, what is the CDC doing that we can’t do regionally?”

But during Monday’s briefing, Army Col. RJ Mikesh, chief information technology officer for Operation Warp Speed, said the data collection was part of a “whole-of-the-world approach. America ”from vaccine distribution. And some experts say that in the midst of a pandemic that has already claimed the lives of nearly 284,000 people in the United States, now is the time to create a federal vaccine registry.

“We are in a pandemic,” said Dr. Carlos del Rio, an infectious disease expert at Emory University in Atlanta. “Privacy has its role, but it can’t be what drives the decision-making when trying to accomplish a monumental task like vaccinating millions of Americans with a vaccine that requires two doses.”

The fight for the registry also once again exposes the fractured nature of health data collection – and how the government’s lack of sophistication has hampered the response to the pandemic, said Dr Dan Hanfling, response expert at emergency and vice president at In-Q-Tel, the investment arm of the national intelligence community.

Some national immunization registries can coordinate to exchange information directly without a centralized federal database, but others cannot. “If you don’t have a national system, then at least there should be consistency in what states are doing,” Dr Hanfling said.

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