stigma, discrimination, justice, risk management, participant selection, HIV, online survey, feasibility of HIV self-testing and service delivery, local volunteers (18 years or older), HIV-negative or unknown status
To end the HIV/AIDS epidemic by 2030, the Joint United Nations Programme on HIV/AIDS (UNAIDS) has established an ambitious three-pronged strategy, aiming for 95% of all people living with HIV to 1) know their HIV status; 2) receive sustained antiretroviral therapy; and 3) achieve viral suppression.1 The World Health Organization (WHO) and UNAIDS have defined key populations as those who have a disproportionately increased risk of HIV infection due to specific high-risk behaviors. They include men who have sex with men (MSM), people who inject drugs (PWID), transgender individuals (TG), and female sex workers (FSW). In 2020, key populations and their sexual partners accounted for 65% of global HIV infections.2 While the key populations are most vulnerable to HIV infection and experience the greatest burden of HIV, they are heavily underserved in many regions around the world and face significant barriers in accessing HIV care.1
In one multiethnic Asian country, fewer than 50% of individuals within key populations are aware of their HIV status,3 partly because of human rights violations, social and economic marginalization, and criminalization that create barriers to facility-based HIV testing. An attractive alternative is HIV self-testing (HIVST), a procedure in which an individual can collect their own biological specimen (oral fluid or blood) to perform an HIV diagnostic test. Worldwide, various strategies for HIVST distribution have been proposed. Evidence suggests that peers, nongovernmental organizations, and mobile/social media apps can help reach key populations with HIVST kits.4 In developed countries, both online and social media–based promotion and delivery of free HIVST kits improved the frequency of testing and increased the number of HIVST kit recipients.4
A group of researchers from this Asian country worked with a local HIV/AIDS nongovernmental organization to conduct a study on the feasibility of an integrated self-testing service delivery model for HIVST kits, HIV-related information, and health supplies. The internet-based outreach included online HIV-related resources and information and served as a platform for ordering HIVST kits. Study eligibility criteria included age (adults 18 years and above), current residence within the country, and HIV-negative (or unknown) status. Upon registration and consent to participate in the research, participants completed an online survey to assess their testing history and HIV risks, and they provided a mailing address and working phone number (but no other personal information) when placing their orders for HIVST kits. Within 3 days of online ordering, HIVST kits were mailed free of charge to the mailing address provided by a participant.
Research participants were encouraged to upload a photo of their test results onto the website. If the test was negative, participants would receive two reminders to self-test again, one within 3 months and another within the following 6 months. The participants were also invited to document contextual information about everyday life. Those who choose not to upload a photo of their test results could still be linked to care by referring to directories of community-friendly clinics, HIV/AIDS community organizations, and peers—all of which were available on the study website and on information leaflets. This pilot project aimed to inform the eventual implementation of a sustainable HIVST service delivery program in the country.
Questions
What are the potential benefits and harms of the interventional package used in this research study? Do other aspects of the research raise a potential for benefit or harm?
Research participants may not seek medical follow-up after self-testing, or they may experience emotional distress during the study if, for example, they obtain a positive or false positive result. What do you think the researchers can and should do to address these matters? Who else may have a role to play in addressing them?
Adolescents under 18 years were excluded from the HIVST pilot project. Since teenagers can engage in high-risk behaviors, is it appropriate to exclude adolescents from participating in the study? What are the possible justifications for such exclusion? More generally, what do you think about the appropriateness of the population chosen for inclusion in the study?
What, if any, other ethics-related concerns do you have regarding the study?
