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The Ethical Implications of Using HIV Drug Resistance Testing for Molecular HIV Surveillance

JULY 2024

My name is Veda Jain, and I am a first-year Master of Public Policy Student at the Munk School of Global Affairs and Public Policy at the University of Toronto. 

 I hold an Honours Bachelor of Arts degree in Global Health and Political Science. I became a UofMosaic Fellow to learn how to effectively take action to advance social and health equity, both within Canada and globally. In this publication, I adopt an ethical lens to examine how molecular HIV surveillance causes harm to people living with HIV within Canada. This research paper was inspired by the insights that I gained as an International AIDS Conference attendee in the Summer of 2022. 


This topic aligns with the Mosaic Institute’s mission to dismantle prejudice. Through this publication, I hope that people will better understand how even our public health surveillance systems need to undergo reform to better meet the needs of equity-seeking groups in Canada.

AUTHOR

Veda Jain

UofMosaic Fellow

Cohort: 2021 - 2023

Veda-Jain-Allington-683x1024.jpg

INTRODUCTION

Equity-seeking groups, such as LGBTQ2S+ individuals, Indigenous peoples, sex workers, and people who use drugs, are disproportionately affected by HIV. In addition to facing discrimination on the basis of their health status, these communities are victims of hate-motivated violence, often due to their personal identities. While public health surveillance aims to improve the wellbeing of people living with HIV, there can be harmful consequences when these interventions fail to consider the injustices that these populations face. Identifying how public health surveillance can perpetuate maltreatment towards these historically marginalized communities is critical to advancing health equity within Canada. 

 

My aim is to better understand the negative effects of molecular HIV surveillance on people living with HIV. I begin by providing a brief overview of molecular HIV surveillance. The ethical implications of this public health intervention are then be considered, with a particular emphasis on the issues of informed consent and stigmatization. Special attention is paid to the Canadian legal landscape to better understand the dangers of using molecular HIV surveillance in settings with HIV criminalization laws. I end with a discussion of how public health responses can be reformed to better address the needs of people living with HIV. 

WHAT IS MOLECULAR HIV SURVEILLANCE?  

Molecular HIV surveillance is a form of public health surveillance which aims to identify clusters of HIV transmission in real-time and connect individuals to diagnostic care and treatment (McClelland, 2022). Essentially, molecular HIV surveillance (MHS) is an infectious disease prevention and control measure. This form of public health surveillance is becoming increasingly popular in the US and Canada. To conduct MHS, public health departments analyze the results of people’s HIV drug resistance tests (Texas Health & Human Services, n.d). HIV drug resistance tests are blood samples which determine whether an individual is infected with a type of HIV strain that is resistant to a particular anti-HIV drug (PAHO, n.d). These drug resistance tests are initially collected and analyzed in medical laboratories and are then preserved and anonymized in databases (Trejo & McClelland, 2021). Public health departments gain access to the test results once they are stored in databases, which means MHS involves the usage of secondary data (Samuel, 2021). 

Through molecular HIV surveillance, public health authorities analyze and compare the genetic sequences from people’s blood samples (CDC, 2022). Such analysis allows scientists to identify clusters of viruses that are genetically related and are associated geographically, temporally and according to the stage of disease development (McClelland et al., 2019, Hastings et al., 2021). Molecular HIV surveillance is currently being utilized to detect transmission clusters within Canada. For example, In British Columbia, the BC Centre for Excellence in HIV/AIDS is responsible for monitoring HIV hotspots through molecular surveillance (Evans & Benbow, 2018). The BC Centre for Excellence in HIV/AIDS database contains 32,000 anonymized HIV genotypes (McClelland et al., 2019). 

There are several advantages to utilizing molecular HIV surveillance. Through MHS, public health agencies can more rapidly identify HIV transmission clusters among particular populations, allowing for at-risk and infected individuals to receive HIV care in a more efficient manner (CDC, 2022). This is particularly important for communities who are not well-connected to healthcare systems, such as migrants, drug users, and sex workers (Trejo & McClelland, 2021). The utilization of MHS is also attractive due to its cost-effectiveness (Trejo & McClelland, 2021). Nevertheless, there are several ethical implications of MHS that must be considered. This is particularly important when accounting for Canada’s legal landscape, which criminalizes HIV non-disclosure. 

THE ETHICAL CONSIDERATIONS OF MHS:
ABSENSE OF INFORMED CONSENT & STIGMATIZATION

Molecular HIV surveillance is highly contested; two major concerns of this practice include the lack of informed consent required for data usage, and the stigmatization that results from MHS. As previously mentioned, Molecular HIV Surveillance involves the use of secondary data. Thus, people living with HIV (PLHIV) have not consented to their health information being utilized for public health surveillance and may be unaware that their blood test results are being used to identify transmission clusters (Samuel, 2021). Furthermore, there is a general lack of effort to educate PLHIV that their health data is being sent to public health departments for re-use (Molldrem & Smith, 2020). In a study conducted in Boston, Massachusetts by Rudolph et al. (2020), researchers asked PLHIV participants whether they would consent to having their blood tests used for molecular HIV surveillance. 50% of participants were unwilling to have their health data for such purposes, citing their hesitancy to disclose their HIV status due to stigmatization and confidentiality concerns (Rudolph et al., 2020). Similarly, Tordoff et al. (2022) paused their MHS scientific research due to concerns surrounding the ethical and human rights implications of this public health approach. Such evidence points to the lack of community consultation and transparency in MHS, as well as the importance of establishing consent mechanisms. 

Secondly, MHS is said to increase stigmatization among PLHIV. This is in part due to MHS’s ability to identify the geographic location and socio-economic characteristics of the transmission clusters (Mutenherwa, 2019). This is of great significance when considering how equity-deserving groups in Canada face an inordinate burden of HIV (CATIE, 2022). Moreover, equity-deserving populations are already subjected to homophobia, transphobia, racism, criminalization and oppression. There are various instances in which MHS results have been published in a manner that would compromise the privacy of vulnerable populations and further subject them to stigmatization. For example, in 2019, the Seattle & King County Public Health Unit announced that they had discovered an HIV transmission cluster among female sex workers and homeless male drug users located within a particular area of the city (Murphy, 2020). Publicly sharing such details that allow for communities to be easily identified can further perpetuate discrimination. 

The RELATIONSHIP BETWEEN MOLECULAR HIV SURVEILLANCE AND THE CANADIAN LEGAL LANDSCAPE

Using MHS in areas where HIV criminalization exists can put PLHIV in precarious situations. Canada has the 5th highest number of HIV criminalization cases globally (HIV Justice Worldwide, 2019). According to Canadian criminal law, failure to disclose your positive HIV status to a sexual partner can result in prosecution (Canadian HIV/AIDS Legal Network, 2014). This is known as the criminalization of HIV non-disclosure. In 2012, the Supreme Court of Canada modified this law, specifying that individuals must disclose their HIV status prior to engaging in sexual activity that presents a “realistic possibility of transmission of HIV” (CATIE, 2022). In other words, individuals possess a duty to disclose their HIV status, unless they have a low or undetectable viral load and use a condom (Canadian HIV/AIDS Legal Network, 2014). Individuals who fail to disclose their HIV status are usually charged and convicted with aggravated sexual assault; such a conviction includes jail time (with a maximum punishment of life imprisonment) and registers the individual as a sex offender (CATIE, 2022). 

It is important to note that HIV non-disclosure criminalization can have extremely harmful effects. Individuals have been prosecuted for HIV non-disclosure even when engaging in sexual activity where there is minimal to no risk of HIV transmission (Canadian HIV/AIDS Legal Network, 2019). Moreover, it deters individuals from seeking HIV diagnostic testing and treatment (Canadian HIV/AIDS Legal Network, 2019). Within Canada, such criminalization laws have had adverse effects on equity-seeking populations; Black men and Indigenous women account for a disproportionate number of all individuals charged (Canadian HIV/AIDS Legal Network, 2019).

 

When accounting for the Canadian legal landscape, the utilization of molecular HIV surveillance becomes more complex. Essentially, MHS cannot determine the directionality of HIV transmission (Tordoff et al., 2022). That is, it cannot demonstrate that person X directly infected person Y. As previously stated, MHS can only identify the characteristics of a particular infected population within a given geographical area. However, according to the AIDS United Public Policy Council (2020), there are concerns that MHS data could be misinterpreted, and incorrectly used as evidence in HIV criminalization cases to prove the direct transmission of HIV. In Canada, the Los Alamos genetic database was used to help sentence someone for HIV non-disclosure. Even though the judge had acknowledged that the data could not prove transmission, it was deemed to be useful circumstantial evidence (McClelland et al., 2019). The potential misuse of molecular HIV surveillance for prosecutions and incarcerations would have disproportionate impacts on equity-seeking populations, as they already face over-policing (McClelland et al., 2019). 

MOVING FORWARD

These ethical considerations point to the need for improved public health responses to better reflect the needs of PLHIV. 

 

1. Public health efforts need to prioritize addressing the structural determinants of HIV transmission rather than focusing on surveillance. It is evident that the utilization of surveillance techniques to control HIV has unintended effects on vulnerable populations in legal landscapes where HIV criminalization exists. Thus, as opposed to surveillance, public health officials should emphasize improving access to high quality and culturally-competent HIV care, and expanding access to health literacy. 

2. It’s clear that HIV prevention and control measures need to account for how PLHIV possess feelings of medical distrust. The populations who experience higher rates of HIV have been historically subjected to medical racism and LGBTQ2S+ discrimination in healthcare. Therefore, it is not surprising that there is significant backlash to the secondary use of blood test data without informed consent. Future efforts must account for this historical violence.

3. There needs to be greater transparency and an increased focus on community consultations in HIV responses. PLHIV should be directly consulted with when implementing HIV prevention and control measures. If MHS is to be utilized by public health agencies, comprehensive consent processes must be created. This includes developing an ‘opt-out system’, so that PLHIV can refuse to have their drug resistance tests analyzed through MHS. 
 

REFERENCES

AIDS United Public Policy Council . “Position Statement on the Use of Molecular HIV Surveillance to Track HIV Transmission Networks ,” June 16, 2020. https://www.pwn-usa.org/wp-content/uploads/2021/06/AIDS-United-Molecular-Surveillance-Statement_06.16.20.pdf

Canadian HIV/AIDS Legal Network . “The Criminalization of Non-Disclosure in Canada: Current Status & the Need for Change,” June 18, 2019. https://www.hivlegalnetwork.ca/site/the-criminalization-of-hiv-non-disclosure-in-canada-report/?lang=en

Canadian HIV/AIDS Legal Network. “Criminal Law & HIV Non-Disclosure in Canada,” 2014. http://www.hivlegalnetwork.ca/site/wp-content/uploads/2014/09/CriminalInfo2014_ENG.pdf

CATIE. “HIV Criminalization in Canada,” February 25, 2022. https://www.catie.ca/positive-side/hiv-criminalization-in-canada.

CATIE. “The Epidemiology of HIV in Canada,” September 6, 2022. https://www.catie.ca/the-epidemiology-of-hiv-in-canada.

Centers for Disease Control and Prevention (CDC). “HIV Cluster and Outbreak Detection and Response,” August 24, 2022. https://www.cdc.gov/hiv/programresources/guidance/cluster-outbreak/index.html.

Evans, David, and Nanette Benbow. Ethical Considerations for a Public Health Response Using Molecular HIV Surveillance Data: A Multi- Stakeholder Approach, February 2018. https://doi.org/10.18131/G3MT7B.

Hastings, Colin, Alexander McClelland, Adrian Guta, Maureen Owino, Eli Manning, Michael Orsini, Richard Elliott, Marilou Gagnon, and Stephen Molldrem. “Intersections of Treatment, Surveillance, and Criminal Law Responses to HIV and Covid-19.” American Journal of Public Health 111, no. 7 (2021): 1252–54. https://doi.org/10.2105/ajph.2021.306236.

HIV Justice Worldwide. “HIV Justice Worldwide: Study on the Criminalization of HIV Non-Disclosure,” April 30, 2019. https://www.ourcommons.ca/Content/Committee/421/JUST/Brief/BR10474034/br-external/HIVJusticeWorldwide-e.pdf

McClelland, Alexander, Adrian Guta, and Marilou Gagnon. “The Rise of Molecular HIV Surveillance: Implications on Consent and Criminalization.” Critical Public Health 30, no. 4 (2019): 487–93. https://doi.org/10.1080/09581596.2019.1582755.

McClelland, Alexander. “Carceral Public Health: HIV Surveillance, Treatment & Criminalization.”  March 17, 2022. https://www.alexandermcclelland.ca/blog-1/2022/3/17/carceral-public-health-hiv-surveillance-treatment-amp-criminalization.

Molldrem, Stephen, and Anthony K Smith. “Reassessing the Ethics of Molecular HIV Surveillance in the Era of Cluster Detection and Response: Toward HIV Data Justice.” The American Journal of Bioethics 20, no. 10 (2020): 10–23. https://doi.org/10.1080/15265161.2020.1806373.

Murphy, Tim. “Between Covid and a New Administration, What's to Come for the “Ending the HIV Epidemic” Plan?”. The Body. December 15, 2020. https://www.thebody.com/article/covid-new-administration-ending-the-epidemic-plan.

Mutenherwa, Farirai, Douglas R. Wassenaar, and Tulio de Oliveira. “Ethical Issues Associated with HIV Molecular Epidemiology: A Qualitative Exploratory Study Using Inductive Analytic Approaches.” BMC Medical Ethics 20, no. 1 (2019). https://doi.org/10.1186/s12910-019-0403-9.

Pan American Health Organization (PAHO). “Antiretroviral Therapy,” n.d.. https://www.paho.org/en/topics/antiretroviral-therapy.

Rudolph, Abby E., Omar Martínez, Robin Davison, and Chineye Brenda Amuchi. “Informed Consent for HIV Phylogenetic Research: A Case Study of Urban Individuals Living with HIV Approached for Enrollment in an HIV Study.” Ehquidad Revista Internacional de Políticas de Bienestar y Trabajo Social, no. 14 (2020): 129–44. https://doi.org/10.15257/ehquidad.2020.0015.

Samuel, Krishen. “Molecular HIV Surveillance: Friend or Foe?” aidsmap.com, January 18, 2021. https://www.aidsmap.com/news/jan-2021/molecular-hiv-surveillance-friend-or-foe.

Texas Health and Human Services. “Molecular HIV Surveillance ,” n.d. https://dshs.texas.gov/hivstd/cdr/files/AppP.pdf

Tordoff, Diana M, Brian Minalga, Alfredo Trejo, Alic Shook, Roxanne P. Kerani, and Joshua T. Herbeck. “Lessons Learned from Community Engagement Regarding Phylodynamic Research with Molecular HIV Surveillance Data,” 2022. https://doi.org/10.31235/osf.io/52fy8.

Trejo, A., and A. McClelland. “Molecular HIV Surveillance: A Global Review of Human Rights Implications,” October 2021. https://www.hivjusticeworldwide.org/wp-content/uploads/2021/10/HJWW-MHS-Paper-English-Final.pdf

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