Groups call for halt to CDC's HIV genetic surveillance program

Caption

For years, the Centers for Disease Control and Prevention has been tracking outbreaks of HIV infections using genetic sequencing. Some are calling for this practice to stop.

For years, the Centers for Disease Control and Prevention has been tracking outbreaks of HIV infections using genetic sequencing. States that receive funding for their local health departments from the CDC collect and submit this genetic data from people living with HIV. And some are calling for this practice to stop. Sam Whitehead of Kaiser Health News’ Southern Bureau has been reporting on this. He spoke with GPB’s Peter Biello.

TRANSCRIPT

Peter Biello: Sam, what groups want to end this practice and why?

Sam Whitehead: A number of different groups have expressed serious concerns about this practice. It's known as molecular surveillance or molecular HIV surveillance. First among them are people living with HIV. There's this national group of people living with HIV, the U.S. People Living with HIV Caucus. They have called specifically on the CDC to stop this practice, and we can get into some of the reasons why. But there are also other advocacy groups who work in the HIV space. I'm thinking about one, the Center for HIV Law and Policy. They kind of handle the legal aspects of this, and they've expressed real concerns about data privacy and the way that this information could potentially be used with regards to criminalizing people living with HIV.

Peter Biello: How so?

Sam Whitehead: There are a number of states across the country, including Georgia, that do have laws on the books that criminalize different kinds of activities related to HIV. Criminalizing HIV exposure, for instance. So say you're HIV positive, someone accuses you of exposing them.

Peter Biello: How does it work? Do people with HIV going in for treatment also get 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 that the drug they're receiving is still working effectively, blood draws are done then. Now, many advocates that I've spoken with say people living with HIV are used to this. This is part of their normal course of care. What they say people living with HIV are less aware of is that that data — the actual genetic information about HIV — that that data is being transmitted to state departments of public health and eventually on to the CDC.

Peter Biello: And this is not used to identify the genetic sequence of a person. It's not getting into a person's DNA, but it's the virus's DNA. But there are still privacy concerns. Can you tell us about some of those privacy concerns?

Sam Whitehead: I'm sure many listeners have heard any number of stories about any number of data breaches, hacks, ransomware attacks. And we're not just talking about companies. We're talking about governments, too. So it's not unheard of that some kind of data system is breached in some way, shape or form. Another concern that I heard from advocates just regards the generally decentralized nature of the U.S. public health system. So we do have the Centers for Disease Control and Prevention here in Atlanta, but they're also working with dozens of state health departments across the country, each of which have their own data systems. The U.S. public health system is actually quite decentralized, and that was another real concern that I heard from advocates.

Peter Biello: The CDC has heard about at least some of these complaints that people have raised. What has the CDC said in response?

Sam Whitehead: I spoke with someone from the CDC who works with this program, kind of oversees it. And she had heard many of these concerns before. But what CDC told me is that this is an important tool in the agency's tool belt when it comes to addressing HIV. The agency has set this goal for itself to cut new HIV infections by 90% by 2030. And that's an effort that's fallen behind a little bit because of the disruptions caused by the COVID-19 pandemic. And so the CDC official I spoke with said "We've heard these concerns; we're happy to keep engaging with people or maybe even open to letting states tailor how they use this particular program, tailor what this program looks like in their state. But we're not going to stop doing this because it's an important part of our strategy."