Jan 29, 2025 Story by: Editor
This study examines the ethical concerns surrounding community-based HIV testing among African, Caribbean, and Black (ACB) communities in Canada, a population of particular importance in HIV research and policy. Addressing the ethics of HIV testing in ACB communities requires an in-depth analysis that takes into account historical injustices, societal structures, and the core principles of justice, equity, and human rights.
Past healthcare violations, such as the Tuskegee study, forced sterilizations, and unethical medical experiments, have contributed to deep-seated mistrust in medical research and testing within ACB populations. Consequently, the discussion on community-based HIV testing ethics must be viewed in the context of historical exploitation, healthcare-related discrimination against Black individuals, and present-day experiences of anti-Black racism. The concept of structural violence, as described by Paul Farmer, highlights systemic racial disparities in HIV testing, emphasizing the need to examine how ethical considerations intersect with socio-structural inequities affecting ACB communities.
Although ethical challenges in HIV testing have been explored in academic literature, they remain largely under- examined within ACB communities. Some primary ethical concerns include the tension between mandatory reporting and patient confidentiality, the ethical dilemmas healthcare professionals face in balancing individual rights with public health needs, and issues related to voluntary informed consent. Despite these discussions, significant gaps persist in understanding the ethical nuances of community-based HIV testing among ACB communities, and these concerns are not always sufficiently addressed by ethics review boards at community organizations.
In Canada, HIV test samples are processed in local or national laboratories, with results shared among healthcare providers and public health authorities. Unlike some jurisdictions that follow opt-out HIV testing, most Canadian provinces require explicit informed consent for testing. HIV testing policies involve complex regulations that intersect with mandatory reporting laws, privacy policies, and surveillance systems.
Canadian legislation requires that all positive HIV test results be reported to public health agencies for effective disease tracking and management, though the extent to which personally identifiable data is disclosed varies by province. Additionally, certain healthcare providers and public health departments may access this information. However, how data is shared with non-health entities, such as insurance companies, law enforcement, or immigration authorities, remains unclear.
While digital health advancements have been instrumental in public health efforts, they have also raised significant privacy and surveillance concerns, particularly for Black communities. Issues such as excessive monitoring, data breaches, and racial profiling remain pressing concerns. Research suggests that surveillance technologies disproportionately affect Black communities, increasing the likelihood of data misuse and discrimination. Specifically, the retention of HIV surveillance data for research purposes—such as retrospective analysis—raises distinct privacy and security risks. While data collection is critical for tracking the epidemic, it also raises ethical concerns related to privacy, informed consent, and stigma.
Dunbar and Jones highlight that molecular surveillance data-driven public health strategies can intensify surveillance on Black communities. Public health officials increasingly use molecular surveillance techniques to detect and respond to HIV outbreaks by analyzing genetically similar virus strains, which allows for more efficient intervention strategies. McClelland et al. examine the increasing use of molecular surveillance for managing infectious diseases like HIV, noting ethical and legal concerns—especially within Canada, where marginalized communities face over-policing and where HIV exposure and non-disclosure are criminalized.
Canada has some of the strictest HIV criminalization laws globally, disproportionately affecting people who use drugs, sex workers, and migrants with precarious legal status. The criminalization of HIV transmission heightens stigma and discrimination, discouraging people from getting tested or seeking healthcare. Additionally, the intersection of HIV testing and immigration policies exacerbates these challenges, fostering fear and stigma among racialized ACB migrants and raising human rights concerns, including the possibility of deportation based on HIV status.
Another critical ethical issue is the lack of transparency regarding the secondary use of HIV biomaterials and patient data. Ethical concerns related to consent, privacy, and data ownership have been widely discussed in media reports. In Canada, debates have emerged regarding the use of identifiable health data for public health research, particularly during the COVID-19 pandemic when government agencies utilized patient data without explicit consent. These discussions parallel concerns within HIV testing, where individuals worry that their data could be commercialized.
Molldrem and Smith analyze the bioethical challenges of HIV surveillance and cluster detection, with particular attention to privacy risks and informed consent in the reuse of clinical HIV data. While repurposing patient data and biosamples for biomedical research and precision medicine presents opportunities for advancing public health, the ethical dimensions of secondary data use in HIV research remain underexplored. The scope of patient consent is a key factor in determining how secondary data can be used. However, experts in data protection, research ethics, healthcare, patient advocacy, and insurance remain divided on how broad consent frameworks should be. Given the difficulty in predicting all potential future uses of patient data at the time of initial consent, further research is needed to address these concerns effectively.
This study investigates the ethical implications surrounding access to and secondary use of HIV data and biological samples. By incorporating perspectives from ACB communities, this research aims to ensure that HIV data management aligns with ethical standards while addressing community concerns, ultimately fostering a more just and equitable approach to HIV research.
Methodology
Study Design and Approach
The Ubuntu-Pamoja study employed a community-driven research model. ‘Ubuntu,’ an African philosophy meaning “humanity to all,” and ‘Pamoja,’ meaning “together” in Swahili, represent the values guiding this study. The Community Guiding Circle (CGC), composed of 10 ACB community members, played an integral role in shaping the research. The CGC was actively involved throughout the study, contributing to research design, data analysis, and validation processes. Their participation ensured that the study remained community-centered and aligned with ACB perspectives. Members of the CGC also received training to enhance their capacity to conduct HIV-related research and interventions. The study adopted a community-based research (CBR) approach, fostering collaboration between researchers and the CGC to enrich study outcomes.
Participant Recruitment and Eligibility
Participants were recruited through community agencies, social media, and peer outreach. Eligibility criteria included: identifying as Black African or Caribbean, being at least 18 years old, and residing in Manitoba. The study received ethical approval from the University of Manitoba’s Research Ethics Board. Written and verbal informed consent was obtained from all participants, and data confidentiality was strictly maintained.
Data Collection and Analysis
Interviews, conducted in person and online, lasted approximately one hour, with participants receiving a $40 honorarium. Four female ACB research assistants (one PhD candidate and three Master’s-level researchers) conducted the semi-structured interviews, exploring participants’ experiences with HIV testing and access barriers. Thematic analysis, based on the reflexive inductive method, was performed using MAXQDA qualitative software. Key themes emerged, including mistrust in institutions, concerns about data misuse, historical exploitation fears, and the desire for control and transparency over personal health data. Discussions within the research team and CGC ensured that findings accurately reflected participants’ voices and community concerns.
Sample Characteristics
The study included 33 ACB community members from Manitoba, with a mean age of 34, ranging from 18 to 50 years. The sample comprised 20 women and 13 men, with 25 participants identifying as heterosexual and 8 as LGBTQIA+. Geographically, participants resided in Winnipeg, Brandon, and Steinbach.
Most participants had post-secondary education, while six had a high school diploma. Employment status varied: 22 participants were employed, two were international students, and three were unemployed. Immigration statuses included permanent residents, study permit holders, work permit holders, refugees, and Canadian citizens.
This sentiment underscores a deep-seated mistrust and apprehension about potential criminalization. Many respondents feared that sharing their health data across multiple institutions could lead to privacy breaches, stigmatization, and punitive consequences.
Concerns were also raised regarding the impact of testing on health insurance: “Community members are concerned because it might affect their health insurance premiums because of the number of bills. I think there will be some concern on the part of community members regarding who has access to their sample and their results.” (30-year-old Caribbean woman).
This concern highlights fears about the financial implications of health data sharing, particularly the possibility that an HIV diagnosis could result in higher insurance costs. The perceived connection between medical testing and broader socio-economic repercussions influenced participants’ willingness to undergo testing.
Uncertainty Surrounding the Future Use of HIV Data and Biosamples
A prominent theme among participants was the uncertainty regarding how their HIV samples might be used in the future:
“I honestly don’t know. I think it would be helpful in one regard in medical advancements. But on the other hand, you don’t have a lot of control or knowledge of what they will be doing with that sample, so I’m unsure.” (36-year-old African woman).
Some respondents referenced historical instances of medical exploitation within Black communities:
“I think just given the history of testing on Black people and what the outcome of that was, I can see why, you know, Black people are hesitant about it… Also, in the past there have been examples of, you know, that stuff being used against Black people, so I think those concerns are valid.” (29-year-old Caribbean woman).
Another participant echoed these sentiments: “Historically, the Black community has been used as guinea pigs for various types of research, so that is still in our memory… I can definitely see concerns from community members with regards to the future use of their own [blood] samples.” (42-year-old African man).
Others expressed concerns about potential exploitation of their biological samples:
“I do know there have been instances throughout history where people do take it upon themselves to exploit our samples, our DNA, and things like that, so I have concerns about the future use of my samples.” (36-year-old African woman).
These concerns underscore the importance of informed consent and clear policies on how biological samples are stored and used to address fears of exploitation.
Some participants, however, were open to their health data being used for further research, demonstrating a level of trust in the medical field. Nevertheless, apprehension remained regarding unauthorized access to their test results. A key concern was non-medical personnel, such as social workers or public health officials, having access to their information without consent. Participants emphasized their desire to be involved in decisions regarding data access:
“I am OK with doctors seeing it in the future, but if, let’s say, a social worker or other public health officers want access to it, for whatever reason, then I would like if I was maybe like notified and given the choice of whether or not I would like them to have access to it or not.” (27-year-old African woman).
This response illustrates a distinction between trust in medical professionals versus concerns about unauthorized access by non-medical entities.
Another respondent stressed the ethical considerations regarding the future use of biomaterials: “If what I am giving is going to help more people… maybe used to find a cure, then that is good and ethical. However, if it goes in a negative direction, causing stigma, then I have a lot of issues with that. We have to show this sample won’t bring fears, won’t stigmatize the community, and won’t be a weapon.” (45-year-old Caribbean man).
Similarly, another participant reflected on the long-term handling of samples:
“Is it all destroyed once they give me my results or what happens with my sample? I would need to see what my results were, and if I personally thought that it would be a help to science, then I’d let them keep my result. Once I’ve got my results, I’d like to be able to sign something that says either permission to keep this for future research or permission to destroy this right away.” (33-year-old African woman).
Participants also stressed the necessity of transparency regarding sample usage: “Tell the community exactly where the sample is… a path. Even if you have to do a diagram… a picture of where their sample travels. Very straightforward and informative before they agree.” (28-year-old Caribbean woman).
Concerns were also raised about the prolonged retention of samples and the necessity of ongoing communication:
“When they do this… after maybe… three or four years… will they still come back to tell me? They can use my sample, but I don’t want to hear about that after like 10 years.” (24-year-old African man).
Additionally, some participants feared the commercialization of their data:
“I don’t want the information to be sold; I don’t know where people sell it. Everyone is always paranoid about it getting sold to something. I don’t want that. Again, I’m assuming that it [test result] will be treated in an ethical manner.” (31-year-old Caribbean woman).
This sentiment highlights apprehensions about loss of control and the potential for data to be monetized without consent. Finally, another respondent emphasized the necessity of informed consent and fair compensation for future use of their samples: “There should be a consent and probably further compensation.” (37-year-old African woman). This underscores participants’ awareness of the value of their contributions and the expectation of ethical reciprocity. Source: BMC Med Ethics
