The expanding adoption of electronic health systems has enhanced communication, surveillance, decision-making, and cross-dataset bioinformatic analyses. These systems typically incorporate ethical safeguards consistent with international and local human subject protections and deidentification procedures for secondary data use. However, sensitive health information is increasingly accessed through emerging technologies and transnational infrastructures that often outpace existing regulatory frameworks—many of which remain poorly understood by the public. While debate continues regarding the benefits and risks of electronic health records and their interoperability, this study highlights the need for stronger political and public engagement in shaping data-sharing conventions that balance individual autonomy with the common good. Drawing on qualitative data from 30 interviews with health providers in Lesotho experienced in collecting and sharing HIV-related information with international partners for care, research, and product development, we found that interoperable data systems can generate unintended ethical and social consequences. These included avoidance of care, expansion of privatized or “off-the-grid” health services, and increased vulnerability to data exploitation and unauthorized secondary uses. Findings have global relevance as health systems worldwide move toward centralized electronic records. The study informs policy and practice for designing equitable, transparent, and ethically grounded data-sharing frameworks across diverse contexts, including large-scale research collaborations, smaller systems transitioning to digital platforms, and the merging of independent databases for interoperability and artificial intelligence applications.
Watson et al. (Mon,) studied this question.