The Elephant In The Room: The Real Issue With Molecular Surveillance; No Trust In The Medical Establishment

In October of 2023, a coalition representing 110 networks of people living with HIV met to discuss a deep-rooted but under-discussed issue in HIV advocacy-molecular surveillance. 

Similar to the work of ACT UP and building off of a deep history of community advocacy and grassroots mobilization, this meeting was full of ideas and actions. The result of this meeting? The alliance demanded that the Centers for Disease Control and Prevention (CDC) meet with the coalition to discuss concerns related to the next iteration of Molecular HIV Surveillance and Cluster Detection and Response (MHS/CDR) policies. In addition to the demand for a meeting, the coalition circulated a letter that outlined how surveillance policies have a deep history of negatively impacting under-resourced communities, especially LGBTQ+ and Black, Indigenous, and People of Color (BIPOC) individuals. 

The CDC listened and met with the coalition. In turn, they released an updated version of their surveillance policy in February 2024; however, advocates still voiced concerns. The issue? There is a larger conversation of medical mistrust etched in the memory of those living with HIV. There likely would be fewer concerns surrounding molecular surveillance if individuals (1) saw the impact of its effectiveness, (2) were involved in the planning, and (3) had trust in the medical establishment. 

What is molecular surveillance? How does it work?

HIV molecular surveillance is a scientific method used by public health officials to understand how HIV is acquired (“spreading”) in a community. As the name implies, molecular surveillance analyzes the genetic information of the virus that causes HIV and tracks its movement. A similar idea helped us keep track of various strains of COVID. There are several steps involved in the process. 

1. Collection: When someone is newly diagnosed with HIV, a sample of the virus is taken and delivered to a lab/department for further analysis. 

2. Analysis: Next, scientists analyze the virus’s genetic material. All viruses, including HIV, can mutate over time, and their genetic material can change. Therefore, scientists can identify different virus strains by examining these unique genetic sequences.

3. Mapping: Using the above process, scientists can identify similar viruses by comparing the genetic sequences from different samples. It is similar to tracking down some of your family with the same DNA. Each strand of HIV has a unique genetic code. In theory, understanding where HIV diagnoses are increasing can also help public health officials understand how the virus is transmitted within a community. 

   The mapping process also helps identify “clusters,” which the CDC calls the rapid transmission of HIV in a specific group or area. This practice was instrumental in identifying and curbing an outbreak of HIV in those who inject drugs in Indiana in 2015. 

4. Response: Once a cluster is identified, public health agencies work with local entities to design appropriate responses based on the community's needs. Public health officials use the information from mapping to direct their efforts where needed most. If they identify a cluster of similar HIV strains, they can target that area with prevention and treatment services.

 As stated above, there are some examples of molecular surveillance being used to curb HIV. Recently, in 2018, the process was implemented, and it helped identify a group of HIV cases in Seattle. In turn, the officials found that over 70% of their new cases existed in unhoused people who inject drugs. This aided them in drafting the most impactful and effective response strategy.

Why has it been controversial? The past is the present. 

If molecular surveillance has been safely used before, why is it controversial? The U.S. People Living with HIV Caucus gives multiple reasons for the backlash and controversy. 

Due to the government's problematic history with HIV data management and legacy of negligence, HIV molecular surveillance has raised significant concerns among marginalized communities. This history fuels fears that molecular surveillance could again become a tool for oppression, emphasizing the critical need for robust safeguards, transparency, and a thorough reassessment of data use in HIV efforts. Without these protections, molecular surveillance poses a significant risk of harm to marginalized populations.

There is little to no trust in how officials use this data and why it is an integral part of the Ending The HIV Epidemic plan.  Even a brief Google search yields few success stories compared to the countless stories documenting the uproar of concerns of people living with HIV. Moreover, even if molecular surveillance is effective, those impacts, rationale, and narratives of efficacy do not make it back to the communities most impacted. Instead, they share cautions and concerns. 

The Concerns

First, HIV molecular surveillance fundamentally lacks informed consent, undermining individual autonomy and privacy. Often, people are unaware that their genetic information is being tracked and analyzed, violating ethical norms. Let’s put this into context. Imagine visiting a doctor for a check-up and having your medical data—containing private health details—shared with unknown parties without your consent. This could influence decisions about your life, such as where you can live or work, based on a single health aspect, not who you are. There is no trust that the information gathered would be used for communal benefit.

Next, HIV molecular surveillance without explicit consent or transparency can stigmatize and harm individuals by exposing them to judgment based on their HIV status. HIV stigma still exists. This is true even for those who work in public health and medicine. Some may fear that their HIV status, a highly personal and sensitive piece of information, could be mishandled or used against them. This may deter them from seeking necessary healthcare in the future. 

Lastly, and perhaps most damningly, the ties between HIV molecular surveillance and HIV criminalization are undeniable. This surveillance not only maps the virus but inadvertently marks individuals for potential criminal prosecution, exacerbating the stigma and discrimination that queer and BIPOC people already face. For example,  data already highlights how HIV criminalization laws are disproportionately weaponized against Black people and sex workers. It is important to note that, to date, there has not been a single case of HIV criminalization tied to molecular surveillance. However, this is not indicative of the potential pitfalls and perils.

And clinging on to this notion that “it hasn’t been used in this way” misses the most critical conversation at the root of this issue- how can public health and the medical establishment reestablish trust and transparency with people living with HIV? 

The Path Forward

The meeting above highlighted the power of community and the ability to coalesce to spark social change. There is more work to be done, but quite a bit of the lifting rests in the hands of public health departments and other arms of the medical establishment. One first step is to ensure there is always Meaningful Involvement of People Living with HIV (MIPA).

The Meaningful Involvement of People with HIV/AIDS (MIPA) ensures that individuals living with HIV are at the heart of shaping the policies, funding, services, research, and initiatives that impact their lives. MIPA emphasizes transparency, equitable resource distribution, and inclusion, ensuring that the concerns and needs of people living with HIV are integral, not secondary, to addressing the epidemic. 

This body needs to be utilized differently. In the scenario above, the coalition was forced to react to an injustice. However, the alliance would be more impactful if invited to the table before issues emerged. Again, let’s use an analogy.

Imagine you're planning a major renovation for your home. You spend months drafting the design, choosing materials, and outlining the construction plan. But just as you're about to start building, you ask a professional architect for their opinion for the first time. The architect points out fundamental issues with the design that compromise the structure's integrity and suggests significant changes that could have been easily incorporated had they been consulted from the beginning. Similarly, asking people living with HIV for their input after molecular surveillance policies have been drafted is flawed. It's like seeking expert advice only after the plans are set, missing the opportunity to integrate their crucial perspectives. 

It is time to rebuild the house, but this time, we should choose different architects.