Context of data sharing practices in collaborative human genomic research in low and middle income countries: A systematic review

Abstract

Background The collection and aggregation of individual genomic data into large-scale repositories is now a common approach in biomedical research. Funding agencies increasingly require researchers to include data sharing plans in new project proposals, unless there are strong, clearly justified reasons. While sharing human genomic data promotes scientific discovery, innovation, and transparency, it also raises significant ethical, legal, and social concerns (ELSI). This review collated evidence on data sharing practices, context, facilitators and barriers in collaborative human genomic research in low and middle income countries (LMICs). Methods The systematic review was done following a priori criteria. A protocol was registered in PROSPERO (CRD42022297984) and published with PLOS ONE journal. The articles were imported into EndNote software, duplicates were removed and the remaining articles were then transferred to Epi-Reviewer software. Independent reviewers (DES, LN; GK, DES) screened the articles for inclusion and extracted data in pairs. Any disagreements between the reviewers were resolved through discussion and consensus. The JBI checklist was used for assessing quality of the included articles and studies were classified as good, fair or poor. The assessment yielded overall ratings of good which demonstrated sound methodological rigor. We did not exclude any study from our analysis. Seven distinct categories emerged from the narrative synthesis. Results A total of 2061 articles were identified from the initial search (PubMed, 594; Web of Science 340; Google scholar, 1127; and 30 from Bibliography search). The review included 11 articles and explored the context and the ELSI of sharing genomic data. The results included the practice of sharing data collaboratively, the ethical issues identified included: informed consent, data misuse and mistrust, inequity, the social dimensions included stigma and discrimination and the legal issues include data ownership and data protection. The barriers included mistrust and inequity in collaborative research and over regulation. Conclusion Overall, trust and comprehensive cultural consenting process are critical during data sharing. Emphasis should be placed on striking a balance between protecting rights of research participants, the interests of researchers from LMICs and promoting scientific research. Policymakers should establish ethical and regulatory frameworks that emphasize equity and fairness in collaborative relationships.