People Living with HIV Need Comprehensive Education, Consent and Safeguards on Our Data

HIV surveillance is widely recognized as a public good. Public health leaders often say that they count on surveillance data to guide their interventions. However, for people and communities affected by HIV, surveillance may act as a double-edged sword, especially when it participates in stigmatizing and even criminalizing them.

This call addresses the stigmatizing and criminalizing potential of HIV surveillance, focusing on a concerning set of techniques and practices that have become more commonplace in recent years: molecular HIV surveillance (MHS), or cluster detection and response.

The U.S. Department of Health and Human Services, state and local health departments and researchers are re-using medical data collected from people living with HIV for epidemiological surveillance, prevention, and “disease intervention” efforts. MHS data is collected and analyzed without consent from people living with HIV, lacks data protection assurances, and its use is becoming increasingly widespread.

We, the below signed organizations and individuals, demand the Centers for Disease Control and Prevention (CDC) issue an immediate moratorium on the use of MHS as a pillar of the Ending the HIV Epidemic: A Plan for America (EHE) until adequate safeguards protecting the privacy and autonomy of people living with HIV are implemented.

What is molecular HIV surveillance?

When people are newly diagnosed with HIV or when people living with HIV consider switching treatment regimens, blood samples are taken and tests are run to determine what type of HIV the person has and whether their HIV shows any genetic mutations that would lead to medication resistance. The process of analyzing these blood samples is basically a sequence of the HIV genetic materials, known as phylogenetic analysis, and is used to guide treatment decisions between a person living with HIV and their medical team.  

Once the results of phylogenetic analysis have been obtained, doctors and labs are required to report that data to public health officials and the data can then be used in other ways. Results from phylogenetic analysis tests of one individual are compared with results from other individuals to determine if their viruses are related, and if so, how closely. These results are compared not only at the local and state level, but across a national database maintained by the CDC. State and local health departments are required by law to collect personally identifiable information about people with “reportable illnesses,” of which HIV is one. Personally identifiable information, like name and address, is stripped out of the health data before it is sent to CDC.

If the sequences from two or more individuals are closely related, the viruses are considered to be linked. If a certain number of linked viruses are identified within a short period of time, they are labeled a “cluster,” and a public health investigation to track the cluster and stop additional transmissions may ensue. Linked viruses do not mean that one person transmitted the virus to the other. It does mean that their sexual or needle sharing networks are likely overlapping somehow.

Public health officials use the identification of clusters to develop plans to intervene on the spread of HIV. Researchers use this information to study patterns of HIV acquisition and transmission. Because the data is compared across states and jurisdictions, they can determine, for example, if a recent HIV diagnosis in Texas is linked to a recent HIV diagnosis in New York. When there are overlapping clusters, states are encouraged to share names and demographic information with each other. This is concerning when we see HIV criminalization laws differing widely from state to state. This entire process of examining HIV genetic sequence data to examine (and usually to intervene on) patterns of HIV acquisition and transmission is known as MHS.

Where and how is molecular HIV surveillance being used?

MHS is being deployed in all states and territories throughout the U.S. and its use has been drastically scaled up over the past several years. In fact, the U.S. Department of Health and Human Services and the CDC have made molecular HIV surveillance one of four pillars of the EHE, and are requiring MHS use in every jurisdiction where there is “end the HIV epidemic” funding.  

Data from phylogenetic testing is also uploaded to large databases, such as the Los Alamos database, where it is accessible to anyone who wants it for research and other purposes. The information stored in databases are de-identified, meaning that no personal information is attached to it. However, when local public health officials are following up on this data (cluster tracing), it is necessary to re-identify the data (add the personally identifiable information back in) in order to reach individuals as part of public health investigations.

Why are people living with HIV concerned about MHS?

1. We did not consent and were not consulted about the use of MHS on our data. People living with HIV do not generally know that their data is being collected and used in this way. If you’re in HIV care in the U.S., or if you’ve been diagnosed with HIV sometime in the last few years, your data has likely already been uploaded to these databases. We did not consent to having our data used like this and most of us did not know it was happening. In one study conducted in Philadelphia, 50% of people living with HIV did not want to have their blood used for molecular HIV analysis. There has been no organized effort to consult with networks of people living with HIV on how such technologies should be utilized or deployed or how people living with HIV can be educated about this use of their data.

2. There are no consistent protections for sensitive data. There is a lot of variation in health data privacy and data sharing environments, from state to state. The National Association of State and Territorial AIDS Directors (NASTAD) produced an analysis of the legal and regulatory HIV data privacy environment in ten states, and found wide variation in how well HIV data is protected and under what conditions personally identifiable data may be shared without the person’s consent, including sharing HIV data with law enforcement.

3. MHS increases our vulnerability to criminalization. We are from communities that are already overpoliced and surveilled. MHS data risks making us more vulnerable to prosecution, to egregious sentencing, and to loss of other human rights.

   • Black and Latinx people, people in the sex trade, queer and trans people, immigrants, those of us who are unhoused or marginally housed, those of us who use drugs, and those of us who live with mental illness are already frequently targeted by law enforcement.

   • People living with HIV of any race, gender, gender identity, and sexual orientation can also face disproportionate policing and sentencing on the basis of our HIV status, due to laws criminalizing alleged HIV non-disclosure, exposure, and/or transmission. In criminal prosecutions for alleged HIV exposure, prosecutors may seek to introduce evidence that the defendant or plaintiff is part of a transmission cluster. Judges, prosecutors and juries may be biased due to stigma and may also not understand the science enough to know its limitations (for example, MHS cannot currently demonstrate who transmitted HIV to whom, only whether viruses are closely related).

   • For immigrants of any legal status, it is unclear how MHS data could be used in immigration proceedings if an immigrant is identified as part of a transmission network or cluster.

4. Our privacy and confidentiality can be compromised by MHS. Attention from public health departments and from media linked to “cluster tracing” investigations can disclose our private health information, even inadvertently. One newspaper in Seattle went so far as to publicly identify a street on which an “HIV outbreak” was happening among people who were unhoused and using drugs. This type of disclosure presents a risk of violence for people living with HIV.

5. Fuels distrust of public health institutions and clinical care. We are people who are largely from communities that have justifiable distrust of medical and research institutions. Yet, people living with HIV have attempted to overcome that to foster relationships with our healthcare providers in order to maximize our well-being. The process of MHS risks our relationship to our healthcare provider, who has not and cannot stop the use of our medical information for surveillance purposes. We have worked to advocate for our needs and sensitize public health agencies -- yet our “partners” at the public health departments started using this new technology on our blood without informing us. We are facing enough obstacles to “ending the HIV epidemic.” We don’t need people distrusting public health even further.

6. Health department workforces do not have consistent standards for training and implementation that protect people living with HIV from possible harm. The public health workforce is inconsistently trained across the regions of the country - including on the capacity to engage communities with disproportionate HIV burden: Black, Latinx and indigenous people, people of trans experience, gay and bisexual men, people who use drugs, people in the sex trade, people who are unhoused and migrants. In addition, policies and procedures for disease surveillance investigations range from partner-models (where health department staff work to build a cooperative relationship with the individual) to punishment-models (where the threat of law enforcement is often used to get individuals to reveal sexual and/or drug-using partner identities). This punishment-model causes harm to those already heavily policed. The arrival of a health department disease intervention specialist at our home or workplace can also create problems for the person living with HIV who may not be open about their HIV status.

7. Public health leaders have not sufficiently opposed HIV criminalization. Although we have seen pockets of public health leadership on the issue of HIV criminalization, such as NASTAD’s observation that "HIV criminalization undercuts our most basic HIV prevention and sexual health messages, and breeds ignorance, fear and discrimination against people living with HIV", the sad fact is that public health leaders are not leading a more coordinated effort to end HIV criminalizaton, discrimination and stigma. If they invested half as much energy in advocating against criminalization as they put into MHS, they could start to build the kind of trust that would make MHS obsolete.

We demand that the CDC and state and local health departments cease all molecular HIV surveillance activities immediately until the following protections and processes are in place:

1. Formalize a process for CDC and the National Institutes of Health Office of AIDS Research to partner with networks of people living with HIV to develop:
   • Guidance on HIV data collection, sharing, and use;
   • Informed consent standards and practices;
   • Community engagement standards for the development of future HIV-related data collection, use, sharing and storage.

2. Creation and implementation of national standards for data protection, including prohibiting law enforcement and immigration enforcement from accessing data, prohibiting data from being used for criminalization purposes, and limitations on the length of time data may be stored.  

3. Require that jurisdictions funded for HIV data collection and surveillance demonstrate, as part of their applications for funding, a meaningful commitment to creating an affirming human rights environment for people living with HIV, including a commitment to end laws and practices that criminalize people living with HIV.