The Centers for Disease Control and Prevention on Friday revised its guidelines for monitoring the genetic signatures of viruses collected from people newly diagnosed with HIV, a controversial practice used by state and local health agencies to contain infections.
The updated policy encouraged health officials to be more transparent with their communities about the monitoring, one of several changes sought by HIV advocacy groups concerned about how so-called molecular surveillance could violate privacy and political patients’ rights.
But the agency did not adopt more significant changes that some advocates had pushed for, such as allowing health services to opt out in states where people can be prosecuted for transmitting HIV
“We’re in a period where health data is increasingly being used in criminal prosecutions, as seen in prosecutions of people who seek abortion care or who may have had an abortion,” said Carmel Shachar, a professor at Harvard Law School who specializes in health care. The revised policy did not go far enough, he said, to protect people with HIV
Dr. Alexandra Oster, who leads the CDC’s molecular surveillance team, said the benefits of the program far outweigh the risks. “We have to do it well,” he 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 block it. But the information can also be used to track its spread through a population — including identifying clusters of people carrying closely related viruses.
The CDC has been using molecular surveillance for decades to track influenza, salmonella and, more recently, Covid.
In 2018, the CDC began requiring health departments that received federal funding for HIV programs to share such data collected from people with the virus. Patients do not need to be told that their virus samples are being monitored.
Molecular surveillance has identified more than 500 HIV clusters in the country since 2016, the CDC said. Health officials can then interview the people in the groups to identify sex or drug-using partners and connect them with testing, needle exchanges and drugs that prevent transmission.
For example, Dr. Carlos Saldana, an infectious disease expert at Emory University, reported in March that molecular surveillance had identified infected people in Atlanta 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 monitoring could violate people’s rights and discourage testing and treatment.
Before the data is reported to the CDC, health departments remove information that could easily identify the patient. But personal data is maintained by state and local health agencies.
In some states, people have been prosecuted for passing on HIV or for not telling their partners that they have it. No criminal prosecutions in the United States are known to involve molecular surveillance data, but activists remain wary of the possibility. They also fear that advances in technology may eventually be able to determine who infected a particular person.
In October, 110 HIV and human rights organizations sent a letter to the CDC expressing “serious concerns” that molecular surveillance was 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 pushed states to collect the names of people diagnosed in state databases, which the agency said would help fight a disease that by then had killed hundreds of thousands of Americans . But many activists protested the policy, delaying its rollout 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 it was aware of only one data breach related to names, in Florida in 1996. It said it was not aware of any such privacy breaches related to molecular surveillance data.
Changes to the agency’s molecular surveillance policy include explicit recommendations that health departments strive to build trust in their local communities. They should “proactively communicate” about surveillance, the updated policy says, including publishing regular reports about its use and how they protect patient privacy.
The new policy did not allow waivers to exempt molecular surveillance in places where that data could be used in criminal proceedings, a change that had been proposed by the National Alliance of State and Territorial AIDS Directors, a nonprofit organization that represents officials public health.
Representatives from more than 40 state or county health departments that the federal government prioritizes for HIV prevention told The New York Times that the molecular surveillance policy has generally been helpful in their efforts to prevent transmission. No one knew about data breaches.
Dr. Matthew Golden, director of the HIV program at the Seattle Area Health Department, said molecular surveillance has helped his team respond to an HIV outbreak among homeless people who inject drugs.
Many people with HIV who were approached thanks to molecular surveillance told his team that they supported its use. “We haven’t really seen a huge opposition,” he said.
