HIV groups warn of privacy risks in how CDC tracks virus samples
The Centers for Disease Control and Prevention on Friday revised its guidelines to track the genetic signatures of viruses collected from people recently diagnosed with HIV, a controversial practice used by state and local health departments to curb infections.
The updated policy encouraged health officials to be more transparent with their communities about tracing, one of several changes sought by HIV advocacy groups concerned about how so-called molecular surveillance could violate patients' privacy and civil rights.
But the agency stopped short of making more significant changes that some advocates had pushed for, such as allowing health agencies to withdraw from states where people could be prosecuted for transmitting HIV.
“We are in a period where health data is increasingly being used in criminal prosecutions, as evidenced by the prosecution of people seeking abortion care or who may have had a miscarriage,” said Carmel Shachar, a professor at Harvard Law School who specializes in in healthcare. According to her, the revised policy did not go far enough to protect people with HIV
Dr. Alexandra Oster, who leads the CDC's molecular surveillance team, said the program's benefits far outweigh its risks. “We have to get it right,” she said. “But we have to keep doing it.”
HIV has a distinctive genetic signature in each person that helps doctors decide which drugs are likely to counteract it. But the information can also be used to track its spread within a population – including identifying clusters of people carrying closely related viruses.
The CDC has used molecular surveillance for decades to track flu, salmonella and, more recently, Covid.
In 2018, the CDC started demanding health departments that have received federal funding for HIV programs to share such data from people with the virus. Patients do not need to be informed that their viral samples are monitored.
Molecular surveillance has identified more than 500 HIV clusters in the country since 2016, the CDC said. Health officials can then interview people in the clusters to identify their sexual or drug-using partners and connect them to testing, needle exchanges and drugs that block transmission.
Dr. Carlos Saldana, an infectious disease expert at Emory University, reported by March, molecular surveillance in Atlanta had identified infected people who might otherwise have been afraid to seek help because of their immigration status or lack of insurance.
Still, many HIV activists have long argued that such tracking could violate people's rights and discourage testing and treatment.
Before reporting the data to the CDC, health departments strip it of information that could easily identify the patient. But personal information is kept by state and local health departments.
In some statespeople have been prosecuted for transmitting HIV or not telling their partners that they are carriers. There are no known criminal charges in the United States involving molecular surveillance data activists remain on guard of the possibility. They also fear that technological advances could ultimately determine who infected a specific person.
In October, 110 HIV and human rights organizations participated sent a letter to the CDC, expressing “serious concerns” that molecular surveillance was being conducted without the informed consent of people with HIV
The CDC said it met with representatives of the activist coalition last fall and incorporated their input into the revised policy.
A similar conflict with HIV activists arose in the late 1990s, when the CDC urged states to do so collect names of diagnosed people in state-run databases, which the agency said would help fight a disease that was by then fatal hundreds of thousands of Americans. But many activists protested the policy, delaying its implementation for a decade. Since 2008, all states have collected the names of people diagnosed with HIV
The CDC said the information is secure and that there was only one known data breach involving names Florida in 1996. It said it was not aware of any such privacy violations involving molecular surveillance data.
Changes to the agency's molecular surveillance policy include explicit recommendations to health departments to promote trust in their local communities. They should “communicate proactively” about the surveillance, the updated policy says, including by publishing regular reports on its use and how it protects patient privacy.
The new policy did not allow for waivers to opt out of molecular surveillance in places where such data could be used in criminal proceedings, a change that had already been made. recommended by the National Alliance of State and Territorial AIDS Directors, a nonprofit organization that represents public health officials.
Representatives from more than 40 state or provincial health departments that are part of the federal government prioritises HIV prevention told The New York Times that molecular surveillance policies had generally been helpful in their efforts to prevent transmission. Nobody knew about data breaches.
Dr. Matthew Golden, director of the HIV program at the Seattle-area health department, said molecular surveillance helped his team respond to an outbreak of HIV among homeless people who inject drugs.
Many people with HIV were too achieved thanks to molecular surveillance told his team they supported its use. “We haven't really seen any major opposition,” he said.