They can really see through me now?
In this post, I'll introduce you to Molecular HIV Surveillance (MHS) in the way that I learned about it. I had just began graduate school, in 2018- the same year MHS was rolled out as part of the CDC’s unprecedented investment in public health systems to “ End the Epidemic”. The introduction of new surveillance technologies required reorganizing at state and local health departments, so MHS and Cluster Detection and Response (CDR) infrastructure could be especially equipped to fulfill their functions. This was a funding requisite of the Ending the Epidemic package (or a Trojan Horse, depending on your perspective).
It was 2018, I was a Research Intern in the Division of Disease Prevention, working across departments on epidemiological projects, including sambas and CDR efforts; and I had special access to shadow the teams. I was also participating in policy analysis, and, of course, (forever a student of culture) a structural ethnography-my unofficial side project.
Core Concepts
Ethnography: The method I used combined theoretically-informed observations, interviews, and immersion in the context under study, with structural analysis of the deeper systems, rules, and patterns that shape the institution. My critical analysis produced questions that even the managerial order were unable to answer. Much of my investigation was copied and sent to the highest levels of leadership, including leaders in adjacent departments, which I only became aware of the connection due to the email itself. Everything in anthropology is evidence if you understand how it fits in the cultural matrix. These inquiries led to further investigation, and at times, I was not given an answer.
Nonetheless, my insight into how each department, division, and program worked together in distinct and shared ways, and the myriad of paths information can take while simultaneously being compartmentalized from the larger whole, became the foundation of all my research thereafter (, as much as it does today.)
Division of Labor and Power (Knowledge) - Durkheim tells us that comparmentalization is a product of the division of labor, which becomes organically part of our mind, not just our work. This will help explain why well-meaning public health professionals ignore their ethical obligations and responsibility as intellectuals in society, when their work is being used to oppress PLWH. The siloed labor keeping each person working desperate from the other, was useful for my efforts to collect information across the agency. My curiousness seemed to breathe life into their otherwise rudimentary schedules; and most were pleased to speak on their work.
Holism is an understanding of the interconnectedness of all things. It refers to an investigative approach that examines all aspects of the Object of Inquiry as parts of a whole. It assumes each aspect of a structure functions to shape the other; and draws from every division to understand the their totality. Nothing can be understood in a vacuum, reduced into itself; so all data collected is situated in specific, and broader, social historical, political economic, and cultural ecological contexts.
Biopolitics is a philosophy term from 1916 that was made part of postmodernism by Michel Foucault, who used it to describes how the state (government, institutions, and private enterprise) uses power to manage organized life. The human body is regulated, populations require administrations, health is monitored, and reproduction, death and burial, as well as the acts of pleasure and corporeal freedoms we enjoy, are all sites of surveillance and control.
Governmentality is another Foucauldian concept about how power works by encouraging people to regulate themselves according to social norms, policies, or the "expert" knowledge of critical institutions like health, security, and productivity. It is a subtle art of governance used to shape how people think and act, leveraging institutional authority, expert citation, and social norms (notwithstanding traditional paths of law and violence). It's crucial to understand how we manage our health, sexuality, education, and overall behavior in ways that feel "natural" and "voluntary".
Technologies of Governance represents a whole sui generis, and the "how it all connects" part of this puzzle. The strategies used, and all instrumentation, software, infrastructure, and resources allocated for, guiding, monitoring, and disciplining people.
Data Justice is an ethical framework for ensure information to used in appropriate ways. It asks “ justice for whom? Data for what purpose? And who gets to decide?” In the context of HIV, who benefits from the data collected and do we have any control or access to it?
HIV Criminalization refers to the laws and policies used against people with HIV to police, punish, and stigmatize them; and leads to overincarceration of PLWH regardless of whether anyone was harmed. Examples include: nondisclosure of HIV status to sexual partners (regardless of transmission), exposure laws for biting or spiting (even though HIV isn't transmitted this way), and transmission (even if it was accidental or you were unaware); all of which carry uncommonly harsh penalties, and are based on fear, misinformation, and stigma rather than science.
My Experience with Molecular HIV Surveillance and Cluster Detection and Response
One of the policy issues I was working on was HIV decriminalization; and, one of the stakeholders was Positive Women's Network. As I researched their position on public health issues, I saw a Call to Action that said "We are People, Not Clusters." I researched further and found an article in the Journal of Bioethics (Bernard, 2020), which formally introduced me to the debate around MHS. As an epidemiologist, I was aware of how genomic sequencing was being used to map out viral evolution to predict and prepare for further outbreaks; but I had not idea how any of this applied to me- an HIV positive man.
Why didn't I know that I was part of a new system of data collection, analysis, reporting, and sharing (and resharing) that uses not only samples my blood, but the genetic information contained within it? Why didn't anyone tell me about this before now?
A Note from Part I: Recall the history of the African epidemic, which raged on for almost two decades "unnoticed" and undefined by global health authorities; while blood specimen samples containing the AIDS virus were stored in research facilities operated by Western powers. It would be offensive at this point to reduce my passionate criticality to conspiracy theorization, considering the ubiquity of commensurabilities between the origins of the global pandemic and its contemporary trajectory on the North American continent. Institutional elites did not consider the voices African community organizers, and they aren't listening to the movement leaders on the issues of MHS and CDR today.
The bewilderment was almost exciting, before a deeper dive took me into the abyssal potential MHS, and CDR, has to undermine the principles of freedom, justice and equality for PLWH; and reduce us to epidemiological data points, categories of risk, and patterns of genetic information. My wide-eyed curiosity became an acutely focused gaze, turned on the few scholars and activists writing on the topicality. Still, I was able to get a general idea of what MHS and CDR were, and why debate was forming to challenge it. I emailed each of the authors, as well as the advocate organizing against these technologies, to try and situate myself in the movement. I was angry.
Without my knowledge, without my consent, the technologies of governance have conspired to bypass my liberties and look directly into The Body, beyond my corporeality, to gather information; and, upon that realization, I accepted that I would never be free as a person living with HIV. So, from that point on, my life changed as I became an active participant in the movement to hold to account the systems of surveillance (and the many corollary technologies they use to defy the fundamental rights and ethical expectations of their subjects).
What is Molecular HIV Surveillance?
The big question of WHAT is MSH is more fun to answer than simply describing its functions. What it is, is a biopolitical tool; that turns individual viral genetic sequences into population-level data, which enables states to manage the "epidemic body", moving beyond the monitoring efforts of individuals, but their networks, as defined by potential transmission. This way, we are "nodes" in mapped visualizations, while the focus shifts away from care towards control and predictive modeling. Risk becomes culturally encoded as clusters are identified in the context of other supportive data points that inform the source.
MHS is a set of rationalities and technologies used to discipline the behavior of PLWH through surveillance disguised as care. It isn't a function of healing, but of control and behavior modification. Prevention becomes based on surveillance rather than engagement and policy is determined by laboratory and computational analyses instead of community led processes.
There is also an argument for structural violence, considering the disproportionate impact of minoritized communities: sex works, drug users, queer people, and Black and Latine folks. Invisible systems that exploit populations who are already over-surveilled, overincarcerated, and over policed, do not need or welcome additional amplification of monitoring systems; they need resources to address root causes of stigma, poverty, and crime.
Is it ethical to collect genetic information without consent, even for public good? I don't want to sacrifice my autonomy for "community protection".
What does it mean to reduce people to viral lineages or "clusters"? The assumptions made in the analysis of these sequencing similarities assume (1) that viral similarity implies proximity, and (2) that transmission is trackable, linear, and knowable. Epidemiologists especially, like most hard scientist, lack any social science or humanities scholarship in their academic background; and as such, often do not realize the biases they impose on and through their work. MHS analysis risks mistaking viral behavior with human behavior, collapsing the difference between the person and the pathogen. This gets messy.
My point is that MHS is more than a system of data collection for genomes. Its an integral part of the way public health delivery is administered in the U.S., especially concerning PLWH.
How It Works:
someone tests positive for HIV, one of the orders in their bloodwork tests for drug resistance; which is a nonproblematic standard of care before technological novelties in genetic epidemiological practice found it was more pertinent to use these samples as databases for identifying patterns of molecular sequencing, which- when visualized- makes clear the connections between the virus in one body and it's copy in another.
Viral genetic sequences are reported to state health department as part of routine surveillance; and these agencies use this information to identify genetic similarities between individuals. When multiple people have nearly identical strains of HIV, they are considered part of a transmission cluster- meaning there is a network or group that can be targeted for enhanced surveillance and monitoring, using the expanded powers granted by the EHE investment to partner with emergency response teams.
Basically, MHS tracks the spread of HIV in a population and detect rapid transmission network. Similarities between viruses indicate possible transmission links between people. Cluster detections then uses this data to identify groups of people whose HIV viruses ae closely genetically related, and visualize clusters. This information is then shared with response workers so they can target communities marked by ArcGIS, and prioritize those networks identified by Data to Care and other systems.
A Note: It's important to know that a cluster does not prove direct transmission between individuals. It is a suggestion based on shared genetic traits, which could be anyone who doesn't know their status or who have never been tested before (thus there is no genetic record for comparison). However, this is major concern for advocates, because the future of this kind of technology will evolve to do just that and then how will the medicolegal authorities respond?
The Technologies of Governance
These are all of the different systems that I've been able to identify, which were integrated with the MHS roll out during the initial EHE investment. The diversity of software and the organizational support used in its development, as well as the interdisciplinarity of use and reuse of data (non-consensually taken), and the vastness of resources coalescing around this seemingly covert order of information gathering, ( a reminder that that there is always already an agenda playing out before you have even arrived on the scene. Similarities, again, with Africa's struggle against coloniality and capital are visible here with Empire and Technocracy ) illuminates the scale of ethical violations and lack of "data justice" for PLWH.
Data from PLWH is shared without consent throughout the imperial core across systems to ends we are never made to know. The esoterica of an agenda begins to emerge if you consider the interconnectedness of these systems of knowledge and what they could do were they to communicate with one another; which is, a program sui generis covered below:
A Note: I am not going to go in-depth with these because I am still learning their full scope. Some of them I've used myself, whereas others are new.
HIV-TRACE (Transmission Cluster Detection Engine )
Developed by CDC with academic support from UC San Diego. It identifies transmission clusters using genetic distances between sequences, which suggest possible linked transmission.
NIBS (National HIV Behavioral Surveillance)
Developed and used by CDC monitors behavior in high-risk populations
Nextstrain
Open-source for real-time tracking of pathogen evolution. It is adapted to HIV Surveillance to identify phylogenies and visualize spread
MEGA (Molecular Evolutionary Genetics Analysis)
Used to build phylogenetic trees and calculate distance; used to identify subtypes in cluster analysis.
RAxML / IQ-TREE / FastTree
Phylogenetic software used to infer evolutionary trees from sequencing data
REDCap (Research Electronic Data Capture)
General Public Health Department data collection and management tool
SAS, R, Python
Biostatical Analysis tools, cluster detection algorithm development, data linkage, and modeling. Also used in Medical Monitoring and Epi Profile building
ESRI ArcGIS and QGIS
Geographic Information Systems platforms used to map clustering of HIV cases
CDC-added Security Programs
Secure HIV-TRACE
eHARS (enhanced HIV/AIDS Reporting System)
Standard case reporting for incidence of new infections; integrates with cluster detection to track cases over time and geography
Partner Services software (Prism and CAREware)
Tracks partner notification and linkage to care
EHRs (Electronic Health Records)
Data lakes (AWS GovCloud)
APIs for exchange
Allow different software to communicate with each other
NHSS (National HIV Surveillance System)
Case-based umbrella system used by CDC with MHS data input.
DMSS ( Defense Medical Surveillance System)
Used by DoD to assess military readiness (or so they say...)
Biosurveillance Ecosystem
Analyzes diverse data sources from labs, social and environmental sources and is connected with international GEIS partners.
GEIS (Global Emerging Infections Partners)
Shared surveillance project with select members.
NBIS (National Biosurveillance Integration System)
Run by DHS, it integrates biomedical data across government agencies, CDC, DoD, USDA, FBI, (CIA...remember how we found Osama Bin Ladin, through genetic sequencing similarities gathered by CIA working as vaccination staff in Afghanistan).
BioSense/ NSSP (National Syndromic Surveillance Program)
Criminal Justice System
Possible unauthorized or informal access to MHS data by law enforcement in jurisdictions with criminal HIV laws, and prosecutors using subpoenas and court orders to obtain data from trial.
A Note: Directionality-one issue advocates warn us about is the potential use of MHS data in determining directionality, or knowing who infected whom. By itself, the data cannot do that; but when enhanced by other data types, inferences can be made: time-stamped clinical data (viral load, CD4 counts, diagnosis dates, ART initiation, all of which is monitored and recorded in the Data to Care system). Detailed phylogenetic analysis and full genome sequencing; epi and behavioral data; and partner notification.
To summarize, the primary technologies of HIV governance work together to establish a pentagon of biosecurity around PLWH by support surveillance in the follow areas:
Surveillance and Data Integration- collects the data and shares it across systems
Biostatistical and Epidemiological Analysis- interprets and reports on findings
Cluster Detection- Uses MHS data to identity similar sequences
GIS and Mapping- uses location information from care markers and ArcGIS to locate clusters
Response Tracking- Monitoring of the response to address the identified cluster
These systems work independently and together, depending on the project; but what is always the same is the fact that without my knowledge, the code which makes me as I am is shared across the systems of state power; and used with unknown impacts. Which is why, I reached out to Stephen Molldrem, (https://stephenmolldrem.com/ ), when I discovered this citation in the article on Cluster's, which I first saw on the PWN website (investigation...). Stephen messaged me back quickly and we set up a Zoom meeting to discuss his novel concept for bioethics, "data justice".stop.
In his article, Reassessing the Ethics of Molecular HIV Surveillance in the Era of Cluster Detection and Response: u a Data Justice (2020), synthesized three key concerns coalescing around MHS, including: (1) the non-consensual re-purposing of personal health information and biomaterial for public health surveillance; (2) the enrollment of MHS data into a larger data assemblage to make determinations about transmission directionality, and the criminalizing implications that follow such determinations; and (3) the amplified targeting and stigmatization of our communities, whom are already oppressed and marginalized. This tumultuous triune has become the foundation for scholarly debates on bioethical surveillance and disease monitoring for HIV as well as COVID and other pathogenic recording projects.
However, it would be elitist to say that these criticisms emerged in the minds of these scholars sui generis; when it was Positive Women's Network (PWN) who first raised concerns about MHS and CDR in 2018. Their eye is constantly on the political and liberatory ramifications of HIV related developments. Having gotten to know some of these through my work to decriminalize HIV in 2020, I was able to reach and ask about the status of the movement.
Had any of PWN's, Stephen's or other concerned persons' issues been considered?
The State's Response to Ongoing Pressure from Organized Advocacy
Right about the time I signed on for another disease prevention internship cycle with the health department, the leadership team had put their heads together and presented the best solution to the public scrutiny of cluster detection language and practice, and MHS altogether. It was, in line with what most institutions do in these cases, an open meeting for the public to express their concerns and feel heard; with the set intention that leadership would take these issues back to the Power That Be and initiate change. Of course, anyone with a historiographic memory knows that has never and will not likely ever be the case. It was a performance.
Still, as a member of the Community Health Advisory Board and intern tasked with notetaking, I attended. Before the meeting I read through the CDC's DETECTING AND RESPONDING TO HIV TRANSMISSION CLUSTERS: A GUIDE FOR HEALTH DEPARTMENTS (2018),- a PDF to this document can be sent to you if you just email me-. which inspired more inquiry into the scope of responsibilities and expanded powers granted to the teams designed for Cluster Response. I also went back through the archives, and found an earlier meeting from 2015 that addressed community concerns surrounding the Medical Monitoring Project. Here are the notes from that meeting, which was an precedent for this meeting in terms of scale and scope of new data collection technologies and surveillance policy.
So as you can see from the meeting notes above, a valid attempt was made to engage the community's input on how best to address concerns about the new MMP. The extent to which it made a difference, however, is was always already overruled by the funding source: CDC EHE.
Ethnographic Record
This is an ethnographic record of the founding of Molecular HIV Surveillance (MHS), Rapid Cluster Detection and Response program of **Department of Health, written as an email reply to my initial correspondence, which I have also included for reference. The author happens to be an old friend of mine, whom I did not know was responsible for the development of this program; but after learning about her integral role in operationalizing the call to action by CDC, I reached out immediately. Our historical relationship afforded me an opportunity to be more familiar about the issue and inquires I have about MHS, which prompted the following narrative.
The image here is an example of a visualization of MHS CDR.
Original Email
Dear Her Name,
I hope you are well and finding some peace and joy in these pandemically-precarious times! For reference, this is Clay Porter, cousin of **************, reaching out to inquire about your work at *DH…specifically regarding Molecular HIV Surveillance and Cluster Detection programs; so, I hope you remember me and are willing/free to chat about this here or via phone/zoom. The next few paragraphs will summarize my interests and inquires for you as an employee of the state, as well as individual experienced (and interested?) in the program as a novel health initiative….I will try my best to be concise, but apologize/thank you in advance for taking the time to read the following texts. <3
Summary: My primary reason for reaching out to you is to inquire about the MHS/rapid cluster detection and response program at *DH, your role in its development and implementation, your role as an employee for *DH, and your thoughts-both personally and professionally- about the program at a variety of levels. There is limited information about this novel initiative available to the public and even less enthusiasm about its goings-on from internal staff. As an intern for *DH, Dept. of Epi-Div. of Inf. Disease, I have tried to locate the program within the state health system, with little to no meaningful end. After learning you were responsible for its development and implementation, I was surprised as much as overjoyed—who would have thought you, ****, and I would all end up working in public health!? What an eccentric yet extraordinary world it is indeed.
Ask: Is there a good time for you and I to speak via Zoom or whatever platform in the next few weeks or so? Let me know and I will make my schedule meet your availability.
Briefly: I have been working as an intern for ********** in Disease Prevention for over a year, on a variety of projects; namely, those efforts aimed at HIV/STI health law modernization, prevention, outreach, and advocacy and organization within the general assembly and wider stakeholder-community. My work with *DH in the role began in 2019 and has evolved into a formal partnership between myself, Eastern Virginia Medical School, *DH, and the apparatus of public health professionals invested- or personally involved- in HIV/STI-related health outcomes. However, my interests in your work is not part of my formal project as an intern with *DH…so, feel free to share both your professional and personal insights about this program, as they will only be used in an academic context.
My background: I graduated from VCU in 2012 with a B.S. in Anthropology and a B.A. in Religious Studies. Afterwards, I stayed in Richmond, working for whomever but volunteering for nonprofits, including Health Brigade, Daily Planet, and Minority Health Consortium. After publishing two scholarly works in 2009 and 2011 on HIV among African American and South African men, respectively, my focus has remained on the health of diverse communities and other minorities at-risk of HIV/AIDS, be it personal or professional, in both academic and applied settings. As a graduate student of epidemiology at EVMS, set to graduate in May, 2021, I am wrapping up some scholarship on HIV decriminalization, incident STI increases, and PrEP program uptake and effectiveness in Virginia; but moreover, am interested in expanding my personal/professional portfolio regarding molecular HIV surveillance and other rapid cluster detection systems in several studios- intellectually, professionally and personally. With over a decade of experience working in HIV/STI prevention, peer-reviewed publications, and subjective insight in culture, health, and sexuality, as someone living with HIV, my interests are multifaceted and interconnected.
Thus, I would appreciate your support in helping me learning as much as I can about Molecular HIV Surveillance and Rapid Cluster Detection, including anything you can share with me about its research and development at *DH, contemporary use in epidemiology and disease prevention, or implementational effectiveness in HIV/STI surveillance, is welcomed; as well as any ethical issues, program politics or legal concerns involved in its uptake in Virginia- embracing all biostatistical and cultural ecological topicality traversing this novel initiative.
I will be heading to Richmond soon to pick up me employee ID badge and agency laptop, so I’ll have an opportunity to meet you in person, even if only to say hi*. In the meantime, let me know when you are available to chat about this and other issues of interests, and I will be certain to make myself available.
Thank you for taking the time to review this lengthy letter and consider my request and I sincerely look forward to hearing from you soon.
Take care old*friend !
-Love-
From the source email:
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