Groups Call for End of the Centers for Disease Control and Prevention’s HIV Genetic Surveillance Program

For years, the Centers for Disease Control and Prevention has been tracking outbreaks of HIV infection using genetic sequencing. Countries that receive funding for their local health departments from the Centers for Disease Control and Prevention collect and provide this genetic data from people living with HIV. Some are calling for an end to this practice. It was Sam Whitehead of the Kaiser Health News Southern Bureau Report this. Talk to Peter Bello of GPB.

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Peter Bello: Sam, which groups want to end this practice and why?

Sam Whitehead: A number of different groups have expressed serious concerns about this practice. It is known as molecular surveillance or molecular surveillance of HIV. The first are people infected with HIV. There is this national group of people living with HIV, the grouping of people living with HIV in the United States. They specifically called on the CDC to stop this practice, and we can get into some of the reasons. But there are also other advocacy groups working on HIV. I’m thinking of one, the Center for HIV Law and Policy. They kind of deal with the legal aspects of this, and they have expressed real concerns about data privacy and the way this information could be used in relation to the criminalization of people living with HIV.

Peter Bello: How is that?

Sam Whitehead: A number of states across the country, including Georgia, have laws on the books that criminalize different types of HIV-related activities. Criminalizing exposure to HIV, for example. So, suppose you have HIV, someone accuses you of exposing them to it.

Peter Bello: How it works? Are people with HIV who are receiving treatment asked or told, “Hey, we’re going to send a sample to the government”?

Sam Whitehead: Well, that’s one of the big concerns here. So to make sure the medication they’re receiving is still working effectively, blood is then drawn. Now, many advocates I’ve spoken with say that people with HIV are used to this. This is part of their natural care pathway. What they say people living with HIV are less aware of is that that data — actual genetic information about HIV — that data is passed on to state public health departments and eventually to the Centers for Disease Control.

Peter Bello: This is not used to determine a person’s genetic sequence. It does not get into a person’s DNA, but it is the DNA of the virus. But there are still privacy concerns. Can you tell us about some of these privacy concerns?

Sam Whitehead: I’m sure many listeners have heard any number of stories about any number of data breaches, hacking, and ransomware attacks. And we’re not just talking about companies. We’re talking about governments, too. So it is not unknown that some kind of data system has been compromised in some way, shape or form. Another concern I’ve heard from advocates relates solely to the generally decentralized nature of the US public health system. So we have the Centers for Disease Control and Prevention here in Atlanta, but they also work with dozens of state health departments across the country, and they each have their own data systems. The US public health system is actually quite decentralized, and that was another real concern I heard from advocates.

Peter Bello: The CDC has heard of at least some of these complaints that people have raised. What did the CDC say in response?

Sam Whitehead: I spoke with someone from the CDC who works with this program, sort of oversees it. I have heard many of these concerns before. But what the CDC told me is that this is an important tool in the agency’s tool belt when it comes to treating HIV. The agency has set this goal for itself to reduce new HIV infections by 90% by 2030. This effort has been delayed slightly by the disruptions caused by the COVID-19 pandemic. So the CDC official I spoke with said, “We’ve heard these concerns; we’re happy to continue to engage with people or maybe even open to letting states customize how they use this particular program, and customize what that program looks like in their state. But we’re not going to stop Doing this because it is an important part of our strategy.”

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