Unmasking the Ethical Dimensions of Data-sharing in Health Research: Perspectives from Researchers at a Public University in Uganda

Abstract

Background In resource-limited settings like Uganda, ethical sharing of health research data is crucial for advancing scientific knowledge. Despite the growing trend of data sharing in the digital age, its adoption in low-resource contexts is often hampered by complex ethical considerations. This report investigates these ethical concerns using data from researchers at a public university, with the goal of informing the development of practical solutions to promote ethical data-sharing practices in Uganda Methods A qualitative phenomenographic study was conducted with 26 participants at Makerere University College of Health Sciences, including professors, lecturers, research fellows, and PhD students. In-depth interviews were conducted via Zoom or in person, using an interview guide. Data were analyzed thematically using ATLAS.ti (V9), following both deductive and inductive approaches Results The study revealed a complex landscape of data-sharing practices among researchers. Participants had varying understandings of data sharing, with some expressing limited awareness. Incentives were widely recognized as crucial for encouraging data sharing. While acknowledging data sources in publications was appreciated, some researchers advocated for co-authorship for significant contributions. Researchers’ autonomy and control over data-sharing practices were influenced by factors such as research concept origination, funding sources, researchers’ financial status, and analytical skills. Institutional policies, cultural norms, and customs that promote a ‘siloed’ research environment also significantly influenced of data-sharing behavior Conclusion This study revealed a complex landscape of data-sharing practices among researchers. The varying interpretations of data sharing highlight the need for enhanced education and awareness regarding its importance. The identified incentives, such as financial rewards and co-authorship, which encourage data sharing, suggest a need to establish a fair data-sharing reward system. Additionally, policies that facilitate researchers' autonomy and data control, while fostering trust, are crucial to address the siloed research culture.