HIV Criminalization

Criminalized Lives wins Poz Magazine Award by Alexander McClelland

Criminalized Lives: HIV & Legal Violence wins POZ Magazine award for best represenation of HIV in literature for 2024. Debuting in 2016, the POZ Awards spotlight the best representations of HIV and AIDS in media and culture. The POZ editorial staff selects the nominees, but POZ readers choose the winners. More info here!

“BEST IN LITERATURE

Criminalized Lives: HIV and Legal Violence by Alexander McClelland 

Despite the many advances made in HIV treatment and prevention since the beginning of the AIDS crisis, the legal framework regarding people with HIV lags woefully behind in many cases. Aiming to lay out this harmful legal framework is the work of Criminalized Lives by Carleton University professor Alexander McClelland, who is also a member of the Canadian Coalition to Reform HIV Criminalization. Not only does McClelland dive deep into the ways that Canada’s laws harm people with HIV, he also emphasizes its disproportionate impact on marginalized people, including people of color, indigenous people, LGBTQ people, and people living in poverty. More than just offering McClelland’s views, the book includes personal stories from many people who faced HIV criminalization firsthand.” 

Research in Globe & Mail feature on HIV criminalization in Canada by Alexander McClelland

A recent feature by journalist Zosia Bielski examines the work of the Canadian Coalition to Reform HIV Criminalization calling for Criminal Code reform to address the harms of HIV criminalization, which includes a reference to my work, and forthcoming book, see the below excerpt:

“For HIV-positive people, the prosecutions can be catastrophic.

Alexander McClelland, an assistant professor at the Institute of Criminology and Criminal Justice at Carleton University, spent time with people prosecuted for his forthcoming book, Criminalized Lives: HIV and Legal Violence.

The stories are disturbing: One man recalled being interrogated and beaten by police; another woman spoke of being locked in solitary confinement, naked. Others were vilified as HIV-positive “rapists” by prison guards, then brutalized by inmates. Some were denied HIV medication while incarcerated, growing seriously ill.

“The criminalization haunts every aspect of their lives,” said Prof. McClelland, chair of the coalition’s steering committee.

With their names broadcast through news stories and public safety warnings issued by police, many become alienated from family and friends. Others encounter employers unwilling to hire them and landlords refusing to rent to them, Prof. McClelland found.

“It isolates them in their community, where they face daily forms of harassment and violence,” he said. “These conditions ruin people’s lives.”

Read the complete article here!

Carceral Public Health: HIV Surveillance, Treatment & Criminalization by Alexander McClelland

On March 17, I provided a talk for the Centre for Gender & Sexual Health Equity, as part of their speakers series, below are my remarks, and here is a recording:

Today, I am going to talk through some work I’ve been doing for the past few years on the intersections of HIV criminalization, big data analytics, and public health surveillance, with the goal of sketching out a conception of the notion of carceral public health.

Public health has been changing in the age of big data, where digitized information such as the biomaterial of people (like the unique genetic sequences of the HIV in my body) can be shared widely, aggregated with others, and then use to predict and pre-empt theoretical risks.

This poses ethical questions for consent, the notion of the public, where such practices are taking place in a context of ongoing criminalization – of HIV, sex work, drug use, poverty, migration, and homophobic and racist fears imbedded into public health practice.

Furthermore, there has become an increased reliance on public health in concert with police enforcement responses in the context of COVID-19, as well, where police have been positioned as central actors in responding to public health. A recent report from the Universitê de Sherbrooke, from Veronique Fortin and colleagues outlined that in one year, more than 46 000 tickets were issued, across Quebec, for violations against public health laws.

In the context of HIV, there have been some very helpful legal reforms over the past few years (which I will touch on later), but as the scope of criminal law responses to HIV is narrowed, new forms of public health policy and practice may emerge, where public health officials, police, and the criminal justice system may act in concert in new ways to govern HIV prevention.

The blurring of the boundaries between the institutional domains of public health and criminal justice has the potential to produce new harms in the lives of people living with HIV (More here).

Having a robust understanding and terminology and frames of reference will help both academics and movements of people living with HIV, as we work to seek emancipation from social structures that inhibit our ability to be fully realized people with complex subjectivities, autonomy over our lives, and to live with dignity.

All the work I reference is collaborative, and so up front I must state how grateful I am for the work of my co-conspirators and comrades. And much of the work is ongoing, so this is a sketch of things still in progress, intended to be generative, not definitive.

Carceral is a term that has grown in prominence to highlight a criminal justice system logic of reliance on forms of incarceration and surveillance to organize society and social problems.

And indeed, public health has always been rooted in a carceral approach, and has relied on a continuum of practices from voluntary to coercive. Since its inception in the Dominion of Canada, was public health founded on white supremacist ideals of racial and moral purity – rooted in eugenics, aimed at containing impurities. Women with sexually transmitted infections – known to be sex workers - often Indigenous or non-White settlers were regularly incarcerated in the early 1900s as a means of disease control.

And for public health, the management of risk was constituted as new a kind of clinical judgement that diverged from earlier forms of medical reasoning, which used to attempt to distinguish the normal from the pathological— public health was focused only on risk management and prevention, as Lorna Weir has noted, “bodies at risk are neither sick nor healthy” (2006, p. 19).

Weir examining healthcare for pregnant women, underlined how the life of the baby was supported at the expense of the rights of the mother. When a subject failed to comply with the incitements for the security of health, then disciplinary confinement and correction could be activated. For such authoritarian forms of discipline to be invoked, security must be appealed to via life and death significance. Weir noted that such an instance could “include infectious disease outbreak and epidemic” where “liberal freedoms may [have been] suspended” (p. 15). Once voluntary measures stop working for governance more coercive forms of control emerge.

In Discipline and Punish, Michel Foucault outlines the idea of the “carceral archipelago” – referring both to a collection of islands, and that which is related to jails and prisons - as a metaphor for a continuum of practices, mechanisms, technologies, knowledge systems, and networks related the carceral. The widely used – perhaps overused book - also helped elaborate the dispersion of a carceral logic throughout social institutions – such as the school, hospital, and throughout society.

Others have taken this understanding further in the contemporary moment, such as prison abolitionist Ruth Wilson Gilmour, who has elaborated a conception of carceral geography - “which examines the complex interrelationships among landscape, natural resources, political economy, infrastructure and the policing, jailing, caging and controlling of populations.” (NYT, 2019).

Nicholas Carrier and Justin Piché (2015) outline that for prison and penal abolitionists, the move to address carceral abolitionism is one that acknowledges those detained beyond solely criminal justice grounds, where:

“The move from penal to carceral abolitionism is done by examining preventative detention used under the guise of the ‘war on terror’, the skyrocketing confinement of immigrants and refugees, as well as the rise of mass surveillance that is increasingly transforming the world into an open-air prison.” (2015)

Carceral feminism has been a term brought forth from responses to domestic violence with the transformative justice movement which, as outlined by Victoria Law, in Against Carceral Feminism: Relying on state violence to curb domestic violence only ends up harming the most marginalized women (2015):

“describes an approach that sees increased policing, prosecution, and imprisonment as the primary solution to violence against women”

Law notes that carceral feminists would likely reject the term and not view themselves this way. Critiques of carceral feminist, such as from Anna Terwiel, have (2019) suggested that the term results in an oversimplification, presenting:

“a binary choice between the criminal legal system and informal community justice practices. First, this binary allows critics to overlook rather than engage feminist disagreements about the state and sexual harm. Second, the narrow focus on alternative solutions to harm obscures the plural and contested nature of prison abolition…”  

I fear the same could take place with a conception of carceral public health, and so my goal is not to create an over-simplified binary of options to manage health issues, but to give us a language to articulate the problems that result from carceral logics in a health context.

So, in this effort, I’d like to promote a nuanced approach, proposed by critical public health scholar Eric Mykhalovskiy, and his colleagues (2017), as a critical social science with public health perspective. Such an approach seeks opportunities for research that engages with public health to transform public health practice, to lessen the harmful effects, while contributing to critical social science. And I’m a critical social scientist, more specifically a critical criminologist, so this is where I want things to go.

But such a generous approach to working with a “public health” perspective is hard for me. This approach is still something I am wrestling with, which I’ll elaborate.

I come to academia as an activist, as someone living with HIV, as someone who has been working to address the rights, dignity, and humanity of those of us living with the virus - in Canada there are over 65,000 people with HIV, and over 35 million of us around the world.      

I have had HIV my entire adult life. I found out my status in the late nineties when I was eighteen. It was about a year after the introduction of antiretroviral medications, that began to curb the massive death rate. But still, at the time, my doctor told me I wouldn’t live past thirty, and public health nurses told me to refrain from sex altogether or counselled me about my legal obligations to disclose to sex partners for fear of criminal prosecution.

Also, at the time, there was a news story all over the media about a man being criminally charged for allegedly not telling a sex partner that, he was HIV positive. The only popular representations of positive people, I had seen were either that we were dying, or we were criminals. In public health prevention campaigns, it was implied that we were to be feared, and that no one would want to end up like us.  

For some, life with HIV has been radically transformed to a state of near-normalcy. 

In Canada, due to our healthcare system, the only HIV-related bodily harm I’m likely to face is from the police, the criminal justice system, public health institutions, or from people’s hatred.

It has often seemed to me that the fear that has made HIV criminalized is the same fear underpinning HIV prevention efforts. To those of us living with the virus, fear is the real problem, not HIV. This fear, and lack of connection to the lived reality of people living with HIV, is something deeply rooted in some public health practices. Fear and paternalism.

Despite some recent progress, Canada is still a hot spot for HIV criminalization — where exposure to the virus, or the act of allegedly not disclosing one’s HIV-positive status to sex partners under certain circumstances, can be serious criminal offence, including aggravated sexual assault. Such offences can lead to the long periods of incarceration, sensationalistic media coverage, registration as a sex offender, and daily forms of stigma, discrimination, and violence.  

To date, in Canada there have been at least 206 individuals prosecuted, in 224 different criminal cases, between 1989 and 2020. Thanks to the work of Colin Hastings and others, we know that this is a highly racialized and gendered issue, with Black men, and Indigenous women are over-represented in cases.

The way laws are applied have been further shown to have a disproportionate impact on women living with HIV, putting them at heightened risk of gender-based violence due to power differentials in relationships. These cases often intersect with other criminalized phenomenon and groups of people, such as people who sell sex, as some women prosecuted in relation to HIV non-disclosure were also sex workers.

For my dissertation research, I went across Canada and spoke with and spent time with people who are on the sex offender registry, who had been incarcerated, or who were in the process of criminal trials, or had been threatened with charges in relation to HIV non-disclosure.

Speaking directly with people who have been criminally charged, puts into question dominant understandings, that people living with HIV are violent perpetrators who are actively trying to transmit to others. Rather, what comes to be institutionally understood as wrongdoing by police, courts, public health, and the media, is much less obviously so.

Because of criminalization, complex and nuanced situations, including people’s silence, fear, actual disclosure, or in some cases the inability to address their own HIV status, is forced by the criminal justice system into the dichotomous narrative of victim and perpetrator.

As a critical criminologist, I know that no group of people are inherently criminal, rather, criminalization is a shifting process that targets certain people at certain times for certain purposes. The shifting nature of the criminalization of HIV aligns with a constructivist understanding of “the law,” as elaborated by Nikolas Rose and Mariana Valverde (1998), not as a “unified phenomenon governed by certain principles,” but rather a social, political, economic discursive construction that can be applied to regulate aspects of society at specific moments in time.

Criminalization is not the natural outcome of so-called wrong doing. What this means is that the criminalization of HIV has been actively negotiated and put in place historically by a wide range social forces, actors, and institutions.

The dichotomous victim versus perpetrator logic of the criminal justice system, the process of criminalization transforms people into objects of risk and threat. And in many cases, public health institutions can reinforce the conception of risk through their actions, policies, and work.

I spoke with 16 people, in 27 interviews over 2 years, and not one of them intended to cause harm to anyone else. Because of how they were treated by the criminal justice system, public health authorities, and the media, through spending time in administrative segregation, losing access to privacy with their health information all over the media, being assaulted and harassed by guards, being forced into counselling which pathologized their normal sexual behaviours, as well as being denied medical care, and HIV treatments while incarcerated. To name a few.

All the people I spoke with had a very hard time psychologically coping with being understood as a violent rapist – as the sex they had was consensual (it was the twisted logic of the criminal law that classifies it as a non-consensual act via aggravated sexual assault). None of them met the criteria of being a sex offender but were still mandated to continue in sex offender programs, including undergoing phallometric testing while being forced to watch violent sexual assaults).  

Today, due to the various forms of violence they experienced because of being criminalized, many of the people I spoke with indicated that they live with Post-Traumatic Stress Disorder, which has a wide range of impacts on their daily lives. As a result of the experiences of criminalization, all 16 people had tried to commit suicide, or had long periods of suicidal ideation.

Speaking of binary options, public health has often been positioned as the rational and benevolent way out of criminalization, with the use of public health legislation being posited as a less severe instrument of the state than criminal laws.

An example of this is from the 1990s, with Dr. Richard Schabas, who was Ontario’s Chief Medical Officer of Health from 1987 to 1997 - and who called for HIV to be classified as a virulent disease, meaning under a court order of the medical officer of health, someone could be coercively detained in a hospital. This came about after a widely sensationalized case, of a man who had migrated from Africa, was facing multiple charges of HIV non-disclosure, a widespread racist panic resulted.

Schabas said there was a danger of HIV becoming “criminalized” and proposed the alternate public health option. But that option was to quarantine us.

Like criminalization, Schabas’s public health option, also focused on a form of coerced detention and incapacitation, but quarantine does not have the same evidentiary requirements for the criminal justice system, or oversight of a jury, it was just the will of the Medical Officer of Health to decide.

His proposal to put into force of law the quarantine of people living with HIV led to the largest AIDS ACTION NOW! protest in Canada to-date, with over 500 at Queen’s Park in Toronto calling for his resignation. Despite that, he stayed in his position for many years, although withdrawing his proposal.

Furthermore, when you investigate cases of HIV non-disclosure, that simple binary between criminal law and public health law is undone, as they are not neatly parsed out. Instead, there is a productive cross fertilization across the two institutions (productive in the sense of leading to increased harm for HIV-positive people). In fact, they can be co-constitutive of each other, can reinforce each other, and can be deeply connected.

Two of the people I interviewed had been charged only a few months after testing HIV-positive, with public health officials aiding the police in their cases – one who was under 18 years old, the other in their early 20s. Imagine, instead of seeing one’s role in public health as providing young people with the tools to navigate their sexualities and HIV disclosure in a society that deeply fears our bodies, to instead see your role as to the call the police.

In many cases, on top of criminal laws, public health laws had been mobilized to increase surveillance, and enforce treatment adherence, curfews, and mandate condom use, and forms of counselling.

For some gay men I interviewed, the public health counselling, however, promoted incorrect practices, such as using condoms for oral sex, a practice unnecessary when an individual is virally undetectable. These men had already learned about HIV and sexual health from local AIDS organizations, information they used with their partners. The mandated public health counselling was out of sync with what they learned from AIDS organizations and made them feel pathologized and bad. They felt the mandated public health counselling approach was driven by homophobic fears of gay sex. Because the counselling was mandated, they no longer trusted many public health workers and felt scared to talk to them truthfully about their sex lives. They now equated public health workers as just another part of the criminal justice system.

A criminal charge coupled with a public health order in a person’s past can increase the intensity of the criminal law’s application, understanding a person as an increased risk to the public.

For example, in 2011, when Ontario prosecuted the first-known person in the world with a first-degree murder charge due to HIV non-disclosure and exposure. The man - a immigrant from an African country, had a past of non-compliance with public health orders, and along with testimony from public health officials, that past was used by a forensic psychiatrist to deem him a “dangerous offender”, an official designation in Canadian law meaning he could be detained indefinitely after he has served his sentence as a pre-emptive measure to protect the public because he was perceived as such an intense risk.

The man claimed public health officials were racist and culturally insensitive towards him and had not provided him the tools to navigate his life as an HIV positive person.  

There are also countless instances of people living with HIV being coerced and surveilled by public health or being threatened with criminalization. One man I spoke with for my research took his girlfriend for public health counselling after he found out his status. She was HIV negative (and remained so), the public health nurses told her she could press charges, so she did after a fight with him a few months later. He was undetectable, but instead of supporting the couple to realize their collective health, public health became just an arm of the police.

In another instance, my friend was advised by her doctors to breastfeed her newborn baby, as she was undetectable (virally uninfectious), but because she was HIV-positive, public health authorities opened an investigation against her – despite her doctors’ expert advice. Instead of a time of beauty and celebration, that she, an HIV-positive woman was able to have a baby, that time was marked by fear, surveillance, and suspicion, that she could lose custody because of the public health investigation.

Another friend moved cities across the country. Within a few months in his new home and city, he received a letter from public health authorities which asked him to call them. When he did, they stated that they knew his HIV status and warned him about his legal duty to disclose to all sexual partners. Instead of working to connect him to care, he was left feeling threatened, surveilled, and as though he was a on the threshold of criminalization due to his interactions with public health.

That interaction was post-the 2012 supreme court decision, so the public health authorities were not even communicating law correctly. As we only need to disclose when not using a condom and having a suppressed viral load at the same time. Fear and ignorance prevail.  

In some provinces this rule has now changed, as prosecutorial guidelines have been introduced such as in Ontario and Quebec, where there will be no more charges if someone has a suppressed viral load. Which is a good thing, but at the same time, as a result, people who have achieved viral suppression come to be responsibilized subjects, complying with medical and treatment regimes, while those who are virally unsuppressed may be understood as risky, dangerous, and on the threshold of criminality – these of course will be often people with less access who are made to be marginalized (see Gary Kinsman for more on this).

Take for example, the case of a trans women in Edmonton in 2018, who police issued a public safety warning about (mis-gendering her), claiming she was high risk, because she was a sex worker, and that she had a high HIV viral load. The release made it to the media, with a mug shot, identifying her as the vilest of threats.

Also, consider, from British Columbia, in June 2019, ​​in what was noted as an “unprecedented” intervention when public health authorities collaborated with the Vancouver Police to conduct a widely publicized manhunt (not citing so as to not further amplify the harms of this case).  They released the photograph, name, and description of a man, who allegedly violated conditions under the provincial Public Health Act for not adhering to his HIV medication regime. He was feared to be virally unsuppressed, and therefore infectious.

Here we have two instances of public health relying on the police to manage our viral loads.

While in BC, the issuing a public health order was considered unprecedented, in Ontario, this is a common occurrence – although engaging with the police and media to public enforce an order is rare.

In the BC Guidelines for Medical Health Officers: Approach to people with HIV/AIDS who may pose a risk of harm to others, it discourages the calling of police, but also says:  

“the unlikely event that an MHO does consider that a referral to the police may be necessary in order to protect the public health, it is strongly recommended that the MHO discuss the matter with the Provincial Health Officer and legal counsel before proceeding to do so”

So, while there is some measured language, there is a codified role for the police in public health policy.

Then there is also the issue of out-of-care watch lists. I’d encourage you to investigate the research of Stephen Molldrem, who has examined this in the US context. There is a watch list program in BC, called Retain, through the Centre for Excellence, which seeks to flag people who are considered out-of-care for intensified engagement with public health authorities.

Keep in mind that some people want to stay off the public health record, and that being engaged by public health can be a risk for some people. For migrants, who may be here so-called unofficially, there could the fact that public health investigations could put people at risk for deportation.

Perhaps a side note, but then there also the case of people like Dr. Robert Remis who was a prominent epidemiologist responsible for all of Ontario’s provincial HIV epidemic surveillance, on contract through the Ministry of Health and Long-Term Care, and who at the same time, was also a paid expert witness for the Crown in many HIV non-disclosure trials in the province - where he provided testimony against people living with HIV, helping to put us in jail, while also having access and control over all the surveillance data in the province that was used by public health authorities. He was famously demonstrated against at the Canadian Association of AIDS Researchers Conference, with a banner calling him an AIDS profiteer – but it is important to note how individuals shape and guide institutions and how their attitudes drive our responses.

All these interactions, policies, and experiences outline to me, what Gary Kinsman has long stated: when talking about public health, we must always ask, who is the public? and who’s health?

As HIV-positive people, we are rarely engaged with as members of the public - by public health authorities or otherwise. Instead, we are understood as risks that need to be contained to protect the actual “public”.

So, you can see why I have a hard time viewing public health in a generous light. And why, a “critical social science with public health perspective” is a challenge, if public health sees us as a group to continually conceptualize as objects of risk and antagonize, how could I not?

So, this context brings me to the issue of molecular HIV surveillance. A practice that was innovated in BC and is being exported around the world. In this context, where Canada has been a global leader for criminalizing HIV non-disclosure, the country has also been a global leader in new innovations in prevention.

Epidemiologists, public health experts and infectious disease specialists have increasingly mobilized molecular-based surveillance techniques in seeking to identify, manage and control a range of disease outbreaks, from influenza to tuberculosis, syphilis, HIV, COVID-19. The practices of molecular surveillance vary by disease, but the general aim is to rapidly and accurately identify molecularly similar strains of the virus that can be connected into clusters (More here).

The idea of this approach is to identify clusters rapidly, in the “near real-time”, where transmissions are taking place, and to then intervene with “enhanced public health” approaches to connect people to treatment and care or testing and diagnostics (From: Poon, et. al).

To conduct molecular HIV surveillance, public health authorities mobilize the results of people’s HIV resistance tests. While technology now used for molecular HIV surveillance has been in place since the 1990s, it was previously used solely to monitor HIV resistance. The increased efficacy and cost-effectiveness of the technology has allowed for its widespread repurposing as a form of public health surveillance.

Local Public Health Departments want to identify clusters where HIV is being transmitted at a higher and faster rate than other places. Public Health officials want this information, so they can intervene and prevent transmissions.

The BC Centre for Excellence in HIV/AIDS has been deploying genotyping testing in the province using an automated system for identifying clusters. As of 2016, the database holds 32 000 “anonymized” HIV genotypes for close to 9000 British Columbia residents living with HIV.  Approximately 5-6 new genotypes are added to the system each day, upon which the system is triggered to conduct an automated reanalysis of the entire data pool. The system generates reports on the growth and characteristics of clusters that are then reported to public health officials. In 2014, the system reported a growing cluster of 11 new HIV cases within 3 months among a group of young gay men, including 8 cases with transmitted drug resistance.

As a result, public health officials intervened with “enhanced public health follow-up to ensure linkage to care and treatment initiation in the affected subpopulation” (Poon et al., 2016). 9 of the men were already connected to care so it is uncertain what real impact the intervention had beyond invasions of privacy and consent.

This new molecular surveillance approach means scientists and authorities take the individual genetic make-up of people’s HIV and compare them in a laboratory. This analysis process is done outside of a healthcare setting and without the knowledge of the people whose blood tests are being examined. The people whose clinical tests are examined for this new purpose are not asked for their consent and are mostly unaware that their blood is being used in this way.

And if they were informed, many people would disagree and refuse. In one study, in the US, when people living with HIV were asked if they would consent to participate in having their blood used for molecular analysis, 50% did not consent, indicating fears and concerns related to loss of privacy and confidentiality, as well as disinterest, lack of time, or unwillingness to share their HIV status with others.

When we – a group of concerned people living with HIV, activists, and scholars - responded to one harmful article in the Lancet in 2019, on a study done using this approach which framed trans women as vectors of transmission in LA, the researchers responded back to us that: “the public good of HIV surveillance justifies” the practice of violating consent. Therefore, it is in the public interest to violate the rights of people living with HIV – once again, we are not the public.  

The major finding of the study was that trans women were having sex with straight men, determined in a laboratory by epidemiologists – if you’ve met a straight or bi trans women, this finding is not a shocker, and puts into question what public benefit such research, when it is so disconnected from the actual lives of people it is purported to support.

Only last month, based on another harmful study in the Lancet in a similar vein, there was another letter from my trans colleagues demanding that molecular surveillance research must only be done with the input of trans people and have demonstrated benefit to those communities. This is similar with much of the findings of molecular surveillance, the findings are things we already know, but because it’s a fancy new toy there is a new way where people living with HIV can be objectified as a risk fetish object to examine from afar, so it’s being widely deployed.

Beyond violations of consent, there is also an issue of data sharing. The data from Molecular HIV surveillance only comes to life when it is connected to other demographic details.

Once your biomaterial is digitized, it can be widely shared and connected to other data sets.

One study conducted in Montreal, Canada, titled “Large cluster outbreaks sustain the HIV epidemic among gay men and other men who have sex with men in Quebec,” outlines how multiple data sources were used to conduct the research, including sequencing data from government public health surveillance, along with clinical and behavioural data from a local research cohort study on rapid HIV testing, noting they combined:

“phylogenetic analysis […] genetic sequence datasets from the provincial genotyping programme with clinical and behavioural data from the Montreal [...] rapid testing site cohorts to assess underlying factors implicated in HIV transmission among MSM.” (2013)

The study identified Haitian migrant men who have sex with men as a driving force in the province’s epidemic. Country of origin of transmission is something often sought in these studies, which was done in this one – that HIV is being brought in from racialized outsider. In a highly xenophobic province and country, rife with anti-Black racism, not once did the study acknowledge this context, or the issue of HIV criminalization.

There are also multiple databases around the world which collect genetic sequences for other research, researchers publicly share their data sets of sequences with can be viewed online. Data from one of these labs was used by the Crown as evidence of country of origin of transmission in a major HIV criminalization case in Canada, to highlight the person got HIV in African and infected white women here.

 And across Canada, due to the creeping privatization of healthcare, our blood is held by private companies, such as LifeLabs and Dynacare, who lack mechanisms for accountability and transparency.

And there is a lie that is told that these sequences are anonymized. But in fact, they are a unique genetic marker, and when mobilized by public health the aim is to identify people and intervene in their lives. They want to connect these sequences to other data to help identify “clusters” to transmission – these clusters are people. Thus, the rallying cry coming from the US – and the title of our editorial in 2020, the American Journal of Bioethics, we are people not clusters!

Molecular HIV surveillance is a highly contested practice on which there is much debate. In the US, networks of people living with HIV have called for a moratorium on the practice. And one major NIH funded study in the US was halted because the researchers decided it was unethical to use data collected without consent. Note that the BC Centre for Excellence, along with McGill University, University of Montreal, University of British Columbia, and others continue to expand such research using data collected without our knowledge or consent.

For more on the problems of molecular HIV surveillance, look to the HIV Justice Network’s report I co-authored, where we examined 92 pieces of scientific, community, and expert literature from academic peer-reviewed journals, and grey literature on the practice and came up with a series of recommendations to take seriously the concerns of people living with HIV on molecular HIV surveillance.

Also, as a side note, in terms of data sharing, consider that at the beginning of COVID-19, the province of Ontario, was one of the few jurisdictions in the world to share information on every person who tested positive for COVID-19 with police through a data portal. The data portal was shut down after a few months, with widespread use violations. But this opened a door for police access to health information that was unprecedented.  

Data is not benign. This is true of the data and biomaterial collected for Molecular HIV surveillance, and through other public health forms of surveillance. When placed in social contexts of ongoing institutional violence and racism, data can be weaponized to pathologize, target, regulate, and control, which includes the denial of our rights to consent and autonomy over the uses of own blood. In a context of criminalization, and ongoing pathologizing from public health, this is a concern for our safety and security.

And yes, I know that public health is not a monolith, and I also know that people working in public health see their work as benevolent and in the service of good. But that doesn’t mean that it is.

Along with being a critical social scientist, I also come to my work as an anarchist, with the ethos of working in, against, and beyond systems of oppression, to help address harms in the here and now, with a long-term vision for abolition of social structures that produce harm.

I hope that what I have sketched out here is something that can be heard by public health actors as an appeal for change.

So, what is carceral public health?

In terms of carcerality, with our biomaterial, linked to who we are, where we live, and what behaviours we engage in, in a context of ongoing criminalization and public health pathologizing, the notion of the “transforming the world into an open-air prison” becomes more and more real. With big data analytics, carcerality has new means and can expand its reach and modes of operating.

Such a public health, like the criminal justice system is organized to manage risks to a conceptual public. It is rooted in a racism and colonization. It is focused on prevention, and pre-emption of risk, at the expense of all else. This is prevention for the many through the coercion of, and control of, the few. This can be containment, incapacitation, mainly the use of criminal law means to achieve some perceived health ends.  

In a context of ongoing criminalization and policing, public health legislation should not, and cannot be understood as easily divorced from other components of this apparatus, or as a form of jurisprudence that can be applied in a silo. These approaches are connected, and to undo them we need to understand this complexity.

Finally, such a public health sees the health of people living with HIV as an instrument. For people living with HIV, such a system results in our lives being over-policed, but are under-protected. We live under heightened state of surveillance, but we are provided limited protections when we need help. We are deemed unworthy of care and support unless that support is instrumental in helping us prevent transmission of HIV to others.

So, to move beyond this system, with an eye to abolition, it is time to give a name to these practices, and to call for responses which are in the interest of our dignity and flourishing, which are driven by our communities, which are rooted in what Stephen Molldrem and Anthony KJ Smith, call, HIV data justice. And a move towards responses to collective health issues which are attuned to our rights as members of the public.

 

Thank you.