Ethical and design considerations related to automated, confidential HIV testing invitations: insights from senders and recipients of SMS-based HIV testing invitations in Tanzania

Abstract

Abstract Background Identifying individuals with undiagnosed HIV remains a global challenge. Mobile health (mHealth) approaches that leverage social networks hold potential to increase HIV testing uptake but also raise ethical considerations. Methods We conducted a qualitative study in Moshi, Tanzania, to examine how a pilot test of an SMS-based confidential referral system for HIV testing (CONSORT) was experienced by individuals sending and receiving testing invitations. Focus group discussions were conducted prior to the pilot, while phone-based interviews were conducted both before and after pilot implementation. Data were analyzed thematically using the four ethical principles of mHealth delivery: transparency, agency, accountability, and equitable access. Results Interpretations of message origin and purpose varied, shaping levels of trust and engagement. While many participants viewed the messages as supportive reminders, a few expressed confusion or concern about why they were selected. Attitudes also varied regarding the sharing of phone numbers without prior consent, with some participants viewing this as acceptable and others raising privacy concerns. Perceptions of confidentiality, message timing, and message content influenced acceptability of the intervention. These perspectives informed modifications to the design of the CONSORT system. Conclusions Ethical considerations were integral to participant experiences of CONSORT, demonstrating the need for participatory, context-specific design of mHealth interventions.