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State looks at protecting information gathered through contact tracing

Centers for Disease Control and Prevention

The chairs of the state legislative health committees are proposing a bill that would help protect the privacy of New Yorkers who give personal information to coronavirus contact tracers. They say without the protections, the contact tracing system -- aimed at curbing the virus and avoiding future shutdowns -- won’t work.

The purpose of contact tracing is to help identify virus hot spots and isolate those who may be infected or exposed to infection and offer them support, like grocery deliveries and medical care, until they get well. It could also help avoid future mass lockdowns to contain the spread of the virus.  

The state health department is working with the Johns Hopkins Bloomberg School of Public Health to train the contact tracers. Michael Bloomberg, the former New York City mayor, is helping to finance the program.  

The chairs of the Assembly and Senate health committees, Assemblymember Dick Gottfried and Sen. Gustavo Rivera, said more needs to be done to protect the privacy of those who give information to the contact tracers, and to make sure the data does not end up in the hands of law enforcement or the federal Immigration and Customs Enforcement.  

Gottfried said without the protections, some New Yorkers might be reluctant to give out the names and addresses of people they might have inadvertently infected.  

“It’s not going to work unless all of those people are confident that the information that they give to the contact tracers is not going to be used against them,” said Gottfried, who added there needs to be guarantees in law that the data will not be shared with the police, immigration officials or even their employer.  

Gottfried, who was a key figure in the legislature during the HIV and AIDS epidemic, said privacy protections needed to be created for those with HIV before the contact tracing system could be fully functional.  

Advocates for the measure say the COVID-19 contact tracing comes at a time when the disease has intersected with the Black Lives Matter movement, and heightened concern about mistreatment of African American and Latinx communities by law enforcement.

Black and Latinx Americans have disproportionately contracted the coronavirus and many have become sicker or died from COVID-19. It also comes at a time when a lack of clear immigration policy in the United States has led to thousands of undocumented immigrants living in New York and the nation. 

David Harvey is head of the National Coalition of STD Directors, which represents public health officials and thousands of contact tracers working to curb sexually transmitted diseases. He said the history of contact tracing has roots in racism, when the Tuskegee Institute studied the effects of syphilis on African American men by allowing many of them to suffer from the disease untreated. 

“Ever since this era, our system has been trying to make up for this huge breach in public health trust,” Harvey said. “Trust is core to our ability to counter the COVID epidemic in the United States.”  

Gov. Andrew Cuomo commented on the proposed bill during his daily briefing. The governor said the health department will be sharing general demographic information, but won’t be sharing any personal information with any other government agencies. 

“There is certain information that is not protected, and they’re told that when they fill it out. Basic demographic data is not protected because we want to know. The information I give you here is based on the tests, so that data, by definition, is not protected. You’re a woman, your ethnicity, where you live, your ZIP code -- that is not protected,” Cuomo said. “But the other items that are under health care privacy are fully protected. There’s no information being shared with any federal immigration agency or anything like that.”

But advocates for the measure said some counties have subcontracted with their sheriff’s deputies to become contact tracers. And they said they're concerned over reports that police in Minnesota used contact tracing techniques to learn the identities of protesters.

The bill would forbid law enforcement from working as contact tracers.

A spokesman for the governor, Jason Conwall, said the state will ensure that the personal information is kept private, under HIPAA, the federal law restricting release of medical information. He said the contact tracers are hired with the goal to accurately reflect the diversity of people who live in the communities that they are working with.

A public service campaign conducted by the state health department also warns against potential scammers, and said a contact tracer will never ask for a person’s Social Security number, private financial information or credit card number. But they urge that if your phone's caller ID says “NYS Contact Tracing 518-387-9993," then you should answer.

Karen DeWitt is Capitol Bureau Chief for New York State Public Radio, a network of 10 public radio stations in New York State. WBFO listeners are accustomed to hearing DeWitt’s insightful coverage throughout the day, including expanded reports on Morning Edition.
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