The Centers for Disease Control and Prevention has been tracking HIV infection outbreaks for years using genetic sequencing. States that receive funding for their local health departments from the CDC collect and provide this genetic data from people living with HIV. And some are calling for this practice to be stopped. Sam Whitehead of the Southern Office of Kaiser Health News is… report on this. He spoke to Peter Biello from GPB.
Peter Biello: 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 HIV surveillance. The first among them are people with HIV. There is a national group of people living with HIV called the US People Living with HIV Caucus. They have specifically appealed to the CDC to stop this practice, and we can delve into some of the reasons why. But there are also other interest groups working in the HIV space. I’m thinking of one, the Center for HIV Law and Policy. They are more or less handling the legal aspects of this, and they have expressed concerns about data privacy and how this information could potentially be used in relation to criminalizing people living with HIV.
Peter Biello: How so?
Sam Whitehead: There are a number of states across the country, including Georgia, that have laws that criminalize various types of activities related to HIV. Criminalizing HIV exposure, for example. So suppose you are HIV positive, someone accuses you of exposing them.
Peter Biello: How does it work? Are people with HIV going for treatment also 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 are being given is still working effectively, blood draws are done. Many advocates I’ve spoken to say that people with HIV are used to this. This is part of their normal care. What they say people with HIV are less aware of is that that data — the actual genetic information about HIV — that that data is passed on to the departments of health and ultimately to the CDC.
Peter Biello: And this is not used to identify a person’s genetic sequence. It doesn’t get into a person’s DNA, but it is the DNA of the virus. But there are still concerns about privacy. Can you tell us about some of those privacy issues?
Sam Whitehead: I’m sure many listeners have heard countless stories about some data breaches, hacks, ransomware attacks. And we’re not just talking about companies. We are also talking about governments. So it is not unheard of for some data system to be breached in some way. Another concern I’ve heard from proponents involves 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, each of which has their own data systems. The US public health system is actually quite decentralized, and that was another real concern I heard from proponents.
Peter Biello: The CDC has heard about at least some of these complaints that people have expressed. What has the CDC said in response to this?
Sam Whitehead: I spoke to someone at 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 tackling HIV. The agency has set itself the goal of reducing the number of new HIV infections by 90% by 2030. And that’s an effort that has fallen a little behind due to the disruptions caused by the COVID-19 pandemic. And so the CDC official I spoke to said, “We’ve heard these concerns; we’re happy to keep in touch with people or maybe even open to letting states adjust how they use this particular program. to adapt 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.”