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editorial
. 2024 Oct 26;116(2):265–271. doi: 10.17269/s41997-024-00961-y

Action needed to address molecular HIV surveillance ethical concerns

Alexander McClelland 1,✉, Jason Brophy 2, Alexandra King 3, Maureen Owino 4, Amy Wah 5, Ryan Peck 5
PMCID: PMC12076990  PMID: 39461927

Abstract

There have been growing ethical concerns about the widespread use of HIV-related molecular epidemiological public health surveillance and research—or what has come to be known as molecular HIV surveillance. The varied concerns of the practice originate due to lack of informed consent, lack of demonstrated benefit for communities, potential for eroded patient care relationships leading to poor health outcomes, and potential implications for information sharing and findings which could increase stigmatization and other negative impacts in contexts where HIV, drug use, sex work, migration, and poverty are criminalized. As people living with HIV, lawyers, clinicians, and social scientists, we are part of the growing movement calling for critical and ethical attention to the practice of molecular HIV surveillance and the public health logic which underwrites the practice. We urge Canadian public health actors and researchers working with molecular surveillance data to heed global guidance and recommendations for culturally informed ethical practices, to engage community members in HIV surveillance programs, and to ensure that people living with HIV are provided appropriate consent processes for uses of secondary data analysis. Furthermore, we urge researchers and Research Ethics Boards to interrogate assumptions of impracticality in seeking subsequent consent to use persons’ health information held in data repositories and explore new methods of informed consent.

Keywords: HIV, Ethics, Consent, Human rights, Public health surveillance

There have been growing ethical concerns about the widespread use of HIV-related molecular epidemiological public health surveillance and research—or what has come to be known as molecular HIV surveillance. The varied concerns of the practice originate due to lack of informed consent, potential for eroded patient care relationships leading to poor health outcomes, lack of demonstrated benefit for surveilled communities, and potential implications for information sharing and findings which could increase stigmatization and other negative impacts in contexts where HIV, drug use, sex work, migration, and poverty are criminalized (Chesnay et al., 2013; Sylvestre et al., 2020).

Despite recent changes to limit the scope of criminalization in some provinces via guidance for prosecutors, Canada continues to be regarded as a global hot spot for HIV-related criminalization with upwards of 200 prosecutions. There are many documented harms of the practice for individuals and communities (Hastings et al., 2023). With the potential for federal criminal legal reforms on the horizon, there are concerns this may result in expanded public health surveillance efforts (Hastings et al., 2021), along with new evidentiary requirements, including phylogenetic analysis to prove or disprove transmission. Notably, there is already a precedent of genetic sequence data being used in a high-profile HIV criminal case (R. v. Aziga, 2008). Furthermore, as public health information has been subpoenaed, and officials have been compelled to testify in such cases (Sanders, 2015), there are additional concerns about the unwitting repurposing of molecular HIV surveillance data in criminal legal contexts to advance criminalization efforts (Trejo & McClelland, 2021). This is a specific concern for racialized migrants, who have been subjects of many HIV criminalization cases (Mykhalovskiy et al., 2020), are still impacted by HIV criminalization despite reforms, and have been the objects of analysis by researchers undertaking molecular HIV surveillance with public health data (see Park et al., 2021).

Obtaining genetic sequencing of HIV is considered the standard of care to understand people’s HIV antiretroviral drug resistance. Individual resistance testing results have been collected and repurposed for public health officials and researchers to understand patterns of intensified HIV transmission over time (i.e., clusters). These results are also used to assist in monitoring and informing new and existing interventions (see: Poon et al., 2016). Across Canada, most clinical genotyping resistance samples are sent to British Columbia (BC), where the tests are conducted by the BC Centre for Excellence in HIV/AIDS (BC-CfE).1 Depending on where someone lives, these tests can then be repurposed without consent for surveillance purposes. While molecular HIV surveillance has not been operationalized systematically in Canada, it has been routine practice across BC for years, and has been deployed in other provinces on an ad hoc basis, or for the purposes of specific research initiatives (see: Brenner et al., 2021, 2018; Brumme et al., 2018). In BC, the BC-CfE uses an automated system for identifying clusters where the database holds thousands of anonymized HIV genotypes and generates reports on the growth and characteristics of clusters that are then reported to public health officials who can unmask and identify the people involved for intervention purposes.

Beyond these uses, genomic information may be disclosed for further research, without notice to persons, depriving them the right to withdraw or be informed of findings (Ringuette et al., 2019).2 While routine surveillance by public health institutions does not require ethical oversight in the same ways as institutional research, the sharing of data collected for public health purposes with researchers may put research ethics into question. Furthermore, in this context, the boundaries between research and surveillance can be blurred, where data collected for public health can be shared with researchers, and outcomes of molecular HIV surveillance efforts come to be published as research findings—making it challenging to distinguish between public health and research practice.

While current legal and institutional ethical frameworks may allow for this covert use of clinical data for surveillance, communities and advocates say that justice, human rights, and community-centered ethical principles call for greater transparency and engagement (Bernard et al., 2020). The ways sequencing tests are deployed secondarily is a topic of active ethical interrogation and debate in Canada and around the world (Chelico et al., 2020; Molldrem & Smith, 2020; Mutenherwa et al., 2019, 2020; Trejo & McClelland, 2021). However, despite Canada being a leading innovator of molecular HIV surveillance and research, ongoing ethical debates (McClelland et al., 2019; Tordoff, 2023; Watson & Sweeney, 2020; Guta et al., 2020; Dencik, 2020), ethical guidance (Benbow & Evans, 2018; CDC, 2024; Coltart et al., 2018; Dawson et al., 2020; Molldrem et al., 2023a, 2023b; Mutenherwa et al., 2019; UNAIDS, 2024), and calls for data justice (Bernard et al., 2020) have seemingly resulted in little public action to adapt practices.

While not systematized across the country, the infrastructure is in place to enable widespread molecular surveillance of HIV; and thus, we argue, this is the opportune time to consider a more ethical, transparent, and consent-based approach to secondary use of molecular HIV surveillance data, before such activities are operationalized or scaled up in other provinces.

Collectively, as people living with HIV, lawyers, clinicians, and social scientists, we are part of the growing movement calling for critical and ethical attention to the practice of molecular HIV surveillance and the public health logic which underwrites the practice. Together, we bring forth the following concerns related to molecular HIV surveillance in Canada: (1) lack of informed consent and awareness of how people’s personal health information and biomaterial are being mobilized by public health authorities and researchers; (2) the potential for further marginalization and criminalization of communities; (3) the risk that this practice might lead patients to lose trust in the clinician-patient relationship and disengage from care, with potential for both individual- and population-level harms; (4) the unresolved ethical tensions that arise between public health ethics and medical research ethics regarding utilizing personal health information and biomaterial garnered without consent as a source of data; and (5) lack of community engagement, oversight, and/or consultation regarding ethical data collection and governance.

To further explicate our concerns and offer ethical ways forward, we present two examples, focused on (i) adapting informed consent practices, and (ii) community engagement and collaborative data governance.

Adapting informed consent practices

In 2018, molecular analysis on Indigenous communities in Saskatchewan was published by researchers from the BC-CfE (Brumme et al., 2018). Outcomes resulted in an “ethical storm,” sensationalistic media coverage, and outcry from Indigenous communities and scholars, which “further stigmatized HIV-1 in a province already dealing with the ongoing effects of colonialism and racism” (Chelico et al., 2020). It was noted in the original study that “as Saskatchewan and BC HIV sequences were collected for clinical purposes … the requirement for written informed consent was waived” (Brumme et al., 2018). Chelico and colleagues disagreed with this justification, noting that the researchers practiced only the bare minimum of ethical considerations, and stating that, “engagement is to come before any secondary data use or attempt to create a linkage with an Indigenous community” (Chelico et al., 2020).

Following concerns about the Saskatchewan study, in 2019, people living with HIV questioned the ethics of a study published in The Lancet HIV (Ragonnet-Cronin et al., 2019), which relied on data garnered on trans women in Los Angeles County, similarly without consent (Chung et al., 2019). The study authors responded, noting “[s]urveillance …. is done ethically and without consent” (Wertheim et al., 2019). The authors couched their response in the work of public health ethicist Lisa Lee and epidemiologist Charles Heilig (Lee et al., 2012), who claim that “public health surveillance by necessity occurs without explicit patient consent” (2012, p. 38). Despite informed consent being a cornerstone of medical practice and research, and while there is no unified public health ethics guidance on this issue, it is the case that traditional public health ethics frameworks have justified the re-use of individuals’ routinely collected clinical HIV data without consent (Lee, 2014), an approach which underwrites justifications to not seek consent for molecular HIV surveillance endeavours nor for disclosure and further use of the data in research—as seen in both the Saskatchewan and Los Angeles studies.

Responding to the arguments justifying lack of consent, criticisms have brought into question whether expanded use of HIV genetic sequence data for prevention extends beyond traditional public health ethics frameworks (Molldrem & Smith, 2020) and public health’s legal jurisdiction. This is particularly a concern where multiple sources of demographic data are mobilized in concert with genetic sequences to identify people for intervention purposes,3 and, in a global context, despite expert guidance (Barré-Sinoussi et al., 2018), where some researchers have sought to infer direction of transmission (i.e., who transmitted HIV to whom).4

Furthermore, there have been calls, from people living with HIV and from experts, for the development of initiatives examining models of dynamic consent and opt-out procedures (as little research has been done in the area) (Molldrem et al., 2023a, 2023b). With dynamic consent, consent must be sought for subsequent uses, as further research and surveillance projects are proposed (Ringuette et al., 2019). For example, the “authorization model” allows participants in genetic data banks to exercise a certain amount of control over future uses of genetic data, which provides “individuals the ability to pre-specify uses for which they do or do not wish to give informed consent in the future” (Caulfield et al., 2003).

Such calls aim to revisit outdated public health and research ethics frameworks to account for today’s context where there is potential for health data to be electronically shared and re-shared across space, retained, and reprocessed indefinitely over time.5

To better understand this issue of consent in the context of molecular analysis, researchers in Philadelphia found 50% of the people living with HIV did not want to provide 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 (Rudolph et al., 2020). To further address these concerns, Bollinger et al. (2023) have been working to explore the use of videos to explain the complexities of data uses to enable informed consent for molecular HIV analyses.6

Despite these debates and initiatives, some researchers in Canada who have obtained data from public health authorities, or who have repurposed genetic data collected in clinical settings, continue to use the same justification as the Saskatchewan and Los Angeles study, which relies on an outdated conception of public health ethics and does not account for recent debates or guidance (see: Brenner et al., 2021; Park et al., 2021).

Community engagement and collaborative data governance

Activists living with HIV around the world have adopted the call “We are people, not clusters!” (Bernard et al., 2020), and in the United States have also called for an all-out moratorium on the use of molecular surveillance by public health authorities and researchers (Wilder, 2021). As a result, a National Institutes of Health‒funded study was halted by the principal investigators due to concerns that public health surveillance data were being used without consent in a research context (Tordoff et al., 2023). After suspending their study, Tordoff et al. (2023) note that ethical practices can be strengthened by sharing decision-making with people living with HIV. In 2024, to address concerns, the US Centers for Disease Control and Prevention’s new guidelines urge caution to public health authorities regarding the sharing of data with researchers without consent (CDC, 2024).

As a further antidote to the potential harms of molecular HIV surveillance, researchers and people living with HIV have called for working towards more trusting community collaborations and shared data governance practices (Beaton et al., 2017; Molldrem & Smith, 2020; Schnarch, 2004; Spieldenner et al., 2022). Epidemiologists from the Public Health Agency of Canada recently published a promising protocol promoting shared knowledge exchange processes on molecular research through engaging community activists living in Kenya (Cholette et al., 2023). In the Canadian context of coloniality, approaches to Indigenous data sovereignty and governance (e.g., Ownership Control Access and Possession principles) (Schnarch, 2004; CIHI, 2020), and addressing the Truth and Reconciliation Commission Calls to Action, specifically number 18, on realizing the health care rights of Indigenous people (TRCC, 2015), must be the path forward. Furthermore, in BC, the SPARTA project provides a test case for community governance of public health data, whereby a community-based council vets decisions on uses of data, a model which could be further expanded across the country in other jurisdictions.7

We urge Canadian public health actors and researchers working with public health data to heed global guidance and recommendations for culturally informed ethical practices, to engage community members in molecular HIV surveillance initiatives for both public health intervention and research, and to ensure that people living with HIV are provided appropriate consent processes for uses of data for secondary analysis. Furthermore, we urge researchers and Research Ethics Boards to interrogate assumptions of impracticality in seeking subsequent consent to use person’s genetic HIV information held in data repositories, and support efforts to undertake research on innovations in informed consent models.

Through addressing these concerns, we call for participatory data justice and decolonial approaches. We also call for renewed focus in HIV public health and research practice on building communities of trust and collective care to centre the voices, self-determination, and autonomy of people living with HIV.

Author contributions

This commentary is based on a panel presentation where each panelist’s contribution was integrated into the content of the text. Furthermore, each author contributed to supporting substantive elements of the text conceptually, in drafting and editing of the text. All authors read and approved the final version of the manuscript.

Availability of data and material

N/A.

Code availability

N/A.

Declarations

Conflict of interest

The authors declare no competing interests.

Ethics approval

N/A.

Consent to participate

N/A.

Consent for publication

N/A.

Footnotes

2

Participants cannot exercise their right to withdraw from a study or to be informed of its findings if they are unaware their data are being used.

3

See Poon et al. (2016) for an example of molecular HIV surveillance research which led to direct public health intervention.

4

For example, see: Ratmann, O., Grabowski, M.K., Hall, M. et al. (2019). Inferring HIV-1 transmission networks and sources of epidemic spread in Africa with deep-sequence phylogenetic analysis. Nat Commun 10, 1411. https://doi.org/10.1038/s41467-019-09139-4; and Günthard, H. F., & Kouyos, R. (2019). Can Directionality of HIV Transmission be Predicted by Next-Generation Sequencing Data? The Journal of Infectious Diseases, 220(9), 1393–1395. https://doi.org/10.1093/infdis/jiy737

5

See for example the Stanford (https://hivdb.stanford.edu/) and Los Alamos (https://www.hiv.lanl.gov/content/index) publicly accessible HIV genetic sequence databases.

6

If studied in an HIV context, there is potential for new models of informed consent to be deployed for other forms of pathogen genetic analysis.

7

For more details, see: https://paninbc.ca/sparta-project/

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