Genomic Data Sharing: Navigating The Ethical Issues In Collaborative Research Relationships Between The Global North-South.

Abstract

Background: In recent years, Africa has seen a significant growth in genomic research, leading to the sharing of participant data between researchers in Africa and across the globe.The study aimed to investigate the ethical issues that impacted the sharing of genomic data during collaborative research and explored strategies to promote equity.

Methods: This was a phenomenological qualitative study that utilized the told experiences of key informant interviews to collect data from August 2023 to March 2024. A total of 38 key informants participated in this study, of whom 28.9% were female, and their ages ranged between 30-64 years. The participants included researchers involved in genomics research (16), members of research ethics committees (14), and officials from national regulatory bodies. (8) Interviews were transcribed verbatim and analyzed using thematic analysis and NVivo software 14 was utilized to assist in data management. A total of four main themes emerged: (mis)trust in collaborative research, inequitable access to data due, power differentials, and data sharing as a form of ethical imperialism.

Results: The study revealed (mis)trust in collaborative research was influenced by fear of data misuse, and no framework for benefit sharing. (In)equitable access to data by researchers from low and middle-income countries (LMICs) was attributed to poor infrastructure and limited skill. Researchers in LMICs could be compromised because of the power differentials with their counterparts from the North, resulting in exploitation. Data sharing could be perceived as a form of ethical imperialism by the North imposing its culture on the South.

Conclusion: Establishing relationships with international collaborators that are built on trust and equity is critical. Policymakers should consider developing regulatory frameworks that foster equity and fairness in data sharing and access in collaborative research. This will be facilitated by engaging in active advocacy dialogues with funders, and policymakers, and researchers from both the North and South. Researchers from the Global South should have their capacities strengthened and empowered so they have the skills necessary to access and utilize the data as well as advocate favourably.