consent, vulnerable population, stigma, privacy, legal risk, HIV prevention, mobile health, qualitative research, MSM
In an Asian country with low overall HIV prevalence (less than half a percent), HIV prevalence has been reported to be much higher (nearly 25%) among gay, bisexual, and other men who have sex with men (MSM). In this country, sex between men is criminalized, contributing to high social stigma toward sexual minorities, including those living with HIV. Despite the availability of HIV prevention tools, such as HIV self-testing and oral pre-exposure prophylaxis (PrEP)—a medicine that reduces the chances of getting HIV when taken regularly—access and uptake of these services by MSM are limited.1,2
To address these issues, a research team planned to develop a mobile phone app to enable remote and discreet screening, prescriptions, and delivery of HIV self-test kits and oral PrEP. The app would also send personalized reminders about HIV testing and treatment. The researchers decided to conduct qualitative research to inform the design of the mHealth app, but COVID-19 pandemic lockdowns limited attendance of participants to online focus group discussions. One coinvestigator, who is part of the local MSM community, used his personal accounts on social media platforms to reach online MSM communities, including those in MSM-specific private groups.
The research study recruited MSM who were 18 or older and HIV-negative as well as cisgender MSM who self-reported condomless anal sex with another man in the last 6 months. The coinvestigator shared recruitment information to private social-media groups, directly messaged certain accounts that seemed to fit the inclusion criteria, and used the chat feature of the platforms to explain features of the study to interested MSM. Eligible participants were sent a participant information sheet via email or through WhatsApp, according to participant preferences. Participants were told that the online focus group discussions would be recorded, but that they could use aliases and turn off their video cameras during the 90-minute discussions, which were conducted in English. They were given financial compensation for their time.
Three online focus group discussions were conducted with eight eligible participants in each session, all of whom used aliases and turned off their cameras. All except two participants identified as gay; these two identified as bisexual; and none were heterosexual. At the beginning of each discussion, participants were asked to confirm their consent to join the study either orally or through chat functions. Participants were oriented to a preliminary version of the app and provided feedback about its design. The mobile app interface and its features were also in English. For one of the focus group discussions, a participant had technical issues with the videoconference platform, and so a study investigator met the participant in person and shared their device and account to facilitate study participation.
Questions
A coinvestigator used his personal accounts when recruiting participants online. What do you think are the benefits and risks of this? Are there any alternatives? How do you manage these risks?
The online communities used by the coinvestigator to recruit participants were intended for meeting friends and dates in a discreet manner. How can the coinvestigator be respectful of online communities when recruiting participants?
The coinvestigator helped a participant by meeting him in person so they could both join the session. How might this affect the group discussion? What additional risks should the coinvestigator consider?
Do you have any ethical concerns with the consent procedures followed in the online platform?
