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 tracking, one of many changes sought by HIV advocacy organizations concerned about how so-called molecular surveillance could violate the privacy and civil rights of people. patients.

But the agency stopped short of adopting more significant changes that some advocates had pushed for, such as allowing health agencies to opt out of states where people can be prosecuted for transmitting HIV.

“We are in a period where health data is increasingly being used in criminal prosecutions, as seen in the prosecutions of people seeking abortion services or who may have suffered a miscarriage,” said Carmel Shachar, a professor from Harvard Law School who specializes in health care. The revised policy did not go far enough, she 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 need 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 medications can prevent it. But the information can also be used to track its spread through a population, including identifying groups 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 began to require Health departments that received federal funding for HIV programs will share data collected from people with the virus. Patients you don’t have to be informed have their viral samples traced.

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 groups to identify their sexual partners or drug users and connect them with testing, needle exchanges and medications that block transmission.

For example, Dr. Carlos Saldana, an infectious disease expert at Emory University, reported In March, molecular surveillance had identified infected people in Atlanta who would 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 data to the CDC, health departments strip information that could easily identify the patient. But personal data is in the hands of state and local health departments.

In some states, people have been prosecuted for transmitting HIV or for not telling their partners that they have it. There are no known criminal proceedings in the United States involving molecular surveillance data, but Activists remain cautious. of the possibility. They also fear that advances in technology could eventually determine who infected a specific person.

In October, 110 human rights and HIV organizations sent a letter to the CDC expressing “serious concerns” that molecular surveillance was carried out without the informed consent of people with HIV

The CDC said it met with representatives of the advocacy 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 for states to collect names of people diagnosed in state databases, which the agency said would help combat a disease that had by then killed hundreds of thousands of the 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 it was only aware of one data breach involving names, in florida in 1996. He said he was not aware of any such privacy violations related to molecular surveillance data.

Changes to the agency’s molecular surveillance policy include explicit recommendations that health departments try to build trust in their local communities. They should “proactively communicate” about surveillance, the updated policy says, including by publishing regular reports on their use and how they safeguard patient privacy.

The new policy did not allow exemptions to opt out of molecular surveillance in places where such data could be used in criminal proceedings, a change that had been recommended by the National Alliance of State and Territorial AIDS Directors, a nonprofit organization representing public health officials.

Representatives from more than 40 state or county health departments that the federal government priorities for HIV prevention He told The New York Times that the molecular surveillance policy had generally been helpful in his efforts to prevent transmission. None knew of any data breach.

Dr. Matthew Golden, director of the Seattle area health department’s HIV program, said molecular surveillance had helped his team respond to an HIV outbreak among homeless people who inject drugs.

Many people with HIV who were achieved thanks to molecular surveillance They have told their team that they supported its use. “We haven’t really seen much opposition,” he said.