National Black HIV AIDS Awareness Day on Feb. 7 sheds light on the disproportionate impact of HIV on Black communities. Not only do Black Americans face barriers to accessing treatment and testing, but they are also particularly vulnerable to increased surveillance through a practice known as “molecular HIV surveillance” (MHS).
The Centers for Disease Control and Prevention (CDC) first began requiring all states accepting HIV prevention funds to implement MHS in 2018. MHS refers to the public health use of individual HIV genetic data to identify the sexual and social networks of people who are diagnosed with HIV by mapping out so-called “clusters.” The CDC defines “clusters” as a group of people with a similar HIV sequence.
The MHS program targets Black, brown, and low-income communities by requiring all health departments to engage in an invasive and controversial surveillance practice that nonconsensually collects health data from the 1,086,806 people in the U.S. living with HIV. Surveillance technology is not neutral in a racist society. We must resist and dismantle technologies that profile, criminalize, and punish us.
Imagine that you are a person living with HIV, newly diagnosed, or wanting to switch medications. Your doctor will do a blood test to figure out the best treatment plan for you by identifying HIV viral mutations. Unbeknown to you, those results will be used not just for your treatment, but for surveillance. Your viral code is sent to the state health department and then to the CDC, which does not have full access to your identifying information. The CDC compares and contrasts your viral code with the viral code of other people living with HIV to determine if there is a new and emerging group of people living with HIV who share a close genetic match. If the CDC determines that there is an HIV transmission network, they tell the state health department. It’s during this portion that the identifying information once redacted is now restored.
Armed with identifying information, infectious disease specialists can then track folks down, ask for their sexual or drug-using contacts, and hypothetically connect them to care. But contact tracing like this can also produce reckless, racist, and stigmatizing media coverage, in which news outlets name specific neighborhoods or streets that are “hotbeds” for an active cluster.
Communities most impacted by HIV, like Black, Indigenous, and communities of color, queer and trans communities, sex workers, people who use drugs, immigrants, and folks who are unhoused are already subject to hyper-policing and overcriminalization. People living with HIV are also actively criminalized because of their HIV status in a majority of U.S. states and territories through HIV criminalization laws. MHS is at the center of a political and social environment that stigmatizes, discriminates against, and locks up people living with HIV. It is a form of carceral tech that, while designed in a public health context, is exploitative and further exposes communities to state violence. This is not dissimilar to harms perpetuated through the use of “public safety” tech, like facial recognition software.
According to researchers, there is little evidence demonstrating the benefit or efficacy of MHS. Yet it remains one of the main pillars of the Ending the HIV Epidemic initiative, costing millions of dollars that could otherwise be spent on providing health care and resources to people living with HIV. Throughout American history, there has been a continuous investment in systems meant to monitor and control Black people. Scholar Simone Browne alludes to this phenomenon when she describes “racializing surveillance,” defined as “technology of social control” that reifies “boundaries, borders, and bodies along racial lines.”
Today, public health departments continue this legacy of control and racialized surveillance with the help of data-enabled surveillance tools that track and indefinitely store sensitive personal health information, taken without consent, that can be weaponized by the criminal legal system without adequate protections. The CDC’s resources say they protect the release of public health-related data, but these protections are not in place when local or state laws authorize police to access data. For example, Texas does not have laws that prevent health data from being shared or that stop health departments from cooperating in criminal prosecutions. This leaves people living with HIV vulnerable to prosecution, erodes public trust, and does not serve public health.
Health departments have adopted MHS to aid in HIV prevention and treatment. However, the reality is that technological “innovations” like MHS function as tools that “reproduce processes of containment,” something that scholar Dr. Ruha Benjamin discusses in her seminal work, “Race After Technology: Abolitionist Tools for the New Jim Code.” They are marketed and adopted as “mass improvements,” though they only further harm Black and brown communities. MHS is no different.
MHS is a form of surveillance technology that uniquely and specifically impacts people living with HIV. Therefore, people living with HIV must be meaningfully involved in the planning, implementation, and evaluation of programs like MHS, something networks of people living with HIV have been demanding since MHS’ national rollout in 2018. We need to heed the call of the U.S. People Living with HIV Caucus and declare a moratorium on MHS until adequate safeguards protecting privacy and bodily autonomy are implemented.
I imagine a day when public health practices truly set people on a path toward health, not prisons. The time to resist and abolish carceral technologies is now, and this includes demanding an immediate moratorium on MHS.
