Attitudes and practices of researchers on the sharing of genomic data: a qualitative study in Uganda

Abstract Background Global genomic data sharing promotes transparency by enabling wider access to data. However, it raises ethical concerns, particularly in collaborations involving low- and middle-income countries. Despite growing emphasis on data sharing, limited research examines how researchers navigate these ethical complexities. This study explored researchers’ attitudes and practices regarding genomic data sharing in collaborative research. Methods A qualitative phenomenological design was employed, with key informant interviews (KIIs) conducted between August and December 2023. The study was guided by General Systems Theory (GST) and the Theory of Principlism. GST frames data sharing as part of an interconnected system where multiple components interact within a broader research and governance environment. Principlism offers a lens based on autonomy, beneficence, non-maleficence, and justice. The study was carried out at a university and selected research institutions in Uganda. Institutions and researchers were purposively sampled based on their engagement in genomic research. All interviews were conducted in English, analysed thematically, and managed using NVivo 14. Sixteen KIIs were conducted, with male participants comprising 75% of the sample. Results Three themes emerged: First, willingness to share genomic data: most participants (11/16) expressed willingness, commonly motivated by altruism and perceived scientific and societal benefits, aligning with beneficence. A few were hesitant to share data due to fears of data or preferred restricted access owing to concerns about misuse and re-identification risks, reflecting non-maleficence. Second, experiences with data sharing varied: participants described both positive and negative experiences shaped by collaborative arrangements, institutional capacity, and governance structures, consistent with a GST perspective. Third, attitudes and practices related to selective data sharing emerged, with some researchers emphasizing institutional mechanisms such as policies and data-sharing agreements to regulate access and use and to uphold fairness and justice. Conclusion This study underscores the complex nature of genomic data sharing, characterised by both enthusiasm and hesitancy. Enthusiasm was linked to the principle of beneficence and hesitancy reflected the principle of non-maleficence both tied to Principlism. The theory served as a reminder that data sharing should be approached with caution. The GST lens highlights the need to strengthen institutional systems and governance frameworks.