HIV groups warn of privacy risks from how CDC tracks virus samples

HIV groups warn of privacy risks from how CDC tracks virus samples

The Centers for Disease Control and Prevention Friday revised its guidelines to track the genetic signatures of viruses collected from people newly diagnosed with HIV, a controversial practice used by state and local health departments to combat infections.

The updated policy encourages health officials to be more transparent with their communities about tracking, one of several changes sought by HIV advocacy organizations concerned about how so-called molecular monitoring could violate the privacy and civil rights of patients.

But the agency has not adopted larger changes that some advocates had advocated, such as allowing health agencies to withdraw in states where people can be prosecuted for transmitting HIV.

“We are in a period where health data is increasingly used in criminal prosecutions, as evidenced by the prosecution of people seeking abortion care or who may have suffered a miscarriage,” she said. said Carmel Shachar, a professor at Harvard Law School who specializes in health care. The revised policy doesn’t 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 have to do it right,” she said. “But we have to keep doing it.”

HIV has a distinct genetic signature in each person that helps doctors decide which medications are likely to prevent it. But this information can also be used to track its spread within a population, including identifying groups of people carrying closely related viruses.

The CDC has used molecular surveillance for decades to track influenza, salmonella and, more recently, Covid.

In 2018, the CDC began to demand health departments that have received federal funding for HIV programs to share this data gleaned from people infected with the virus. The patients there is no need to be informed that their viral samples are tracked.

Molecular surveillance has identified more than 500 HIV outbreaks in the country since 2016, the CDC said. Health officials can then interview people in groups to identify their sexual partners or drug users and connect them with testing, needle exchanges and medications that block transmission.

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Eric D. Eilerman

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