The Ethics of Electronically Monitoring Adherence to Antiretroviral Therapy: Theoretical Considerations and Empiric Findings

Abstract

Research Problem: Many electronic adherence monitors (EAMs) exist to track medication adherence, but despite attention in the popular press and expanding use of these devices, the ethics of using EAMs are largely unexplored. Methods: We began by identifying and describing key philosophical considerations that may be relevant to EAM use. We then empirically assessed these considerations among EAM users in rural Uganda. The Uganda AIDS Rural Treatment Outcomes (UARTO) study was an observational cohort study involving standard and real-time EAMs for HIV antiretroviral therapy. We conducted qualitative interviews with 72 individuals (UARTO participants and staff, and local ethical board members). Interviews focused on pre-identified normative domains, but were open-ended to allow novel considerations to emerge. Directed content analysis was used to analyze relevance of hypothesized ethical considerations. Findings: In philosophical analysis, we identified privacy, confidentiality, trust, dependence, and ancillary care obligations as potential considerations for EAM use. UARTO participants were most concerned about confidentiality (revelation of HIV status via EAM use) and trust (researchers believing the EAM rather than the participant’s self-reported adherence). Participants also reported concerns about privacy (feeling judged if providers learned about their non-adherence) and dependence (needing the device to remain adherent). Concerns about EAMs’ impact on autonomy were seldom mentioned. Conclusions: Among rural Ugandans participating in a study of HIV antiretroviral adherence, privacy, confidentiality, trust, and dependence were identified as key ethical considerations for EAM use, while autonomy was less important. These findings should inform EAM-based study design, clinical use of EAMs, and health technology deployment in resource-limited settings.