Exploring Deliberative Engagement for Genomic Research and Biobanking in Africa: Procedural Considerations, Contextual Influences and Associated Outcomes

Abstract

Background: Ethical, legal, and social issues in genomic research and biobanking require innovative community engagement methods. Deliberative engagement offers a promising model for informed discussions and ethical guideline development but is underutilized, especially in resource-poor settings like Ghana. This study explored procedural and contextual factors influencing the implementation of deliberative engagement in genomic research and biobanking and assessed its impact on participants' attitudes towards data sharing as an ethical concern. Methods: This study employed an experimental one-group pretest-posttest research design using a sequential embedded mixed-methods design. A total of 66 participants were selected from the Africa-Wits Genomics Network under the Human Heredity and Health in Africa Initiative in the Kassena-Nankana district of the Upper East region of Ghana. A pre engagement baseline survey assessed participants' awareness and attitudes towards genomic research and data sharing. This was followed by a structured deliberative workshop which provided in-depth information on the significance of genomic research and the ethical considerations surrounding the sharing of genomic data with various stakeholders, including researchers, biobanks, and pharmaceutical companies. Subsequently, participants were divided into small groups for deliberations on the issues presented during the workshops. Post engagement surveys measured changes in awareness and attitudes towards genomic research and data sharing. Additionally, focus group discussions delved further into participants' perspectives on the procedural and contextual factors that could influence the implementation of deliberative engagement, identifying both challenges and opportunities to be considered for future initiatives. The focus group discussions were recorded, transcribed, and analysed using the framework analysis technique, involving data coding and thematic identification. Survey data were exported to Stata version 13.1 MP for cleaning and analysis including descriptive statistics, demographic characterization, and pre- and post-engagement analysis of participant ratings on data sharing and genomic research awareness and attitudes. Statistically significant variations between the two survey time points were identified using Fisher's exact test. Results: The study included 66 participants aged 47-67 years old, predominantly males, 43(65.2%) with many of the participants having primary 16 (24.2%) and junior high school 17(25.8%) education. Procedural factors that influenced deliberative engagement are facilitators’ expertise, session duration and information delivery tools. Whereas the contextual factors that influenced deliberative engagement are group composition, group size and language. Quantitative analysis showed a significant increase in participants' awareness of genomic research from 34(51.5%) to 52(89.7%) with a p-value = 0.001. There was a significant decrease in reluctance to share biological samples and data for commercial purposes from (10)15.2% to (4) 6.8%, indicating a shift in participants' attitudes after participation in the deliberative engagement. Conclusions: Deliberative engagement could potentially be an effective approach for community engagement in genomic research and biobanking. Policymakers and practitioners should consider and address key procedural factors for successful implementation, including facilitator expertise, language, group size, session duration, and information delivery tools. These findings provide valuable insights for promoting responsible and ethical community engagement practices in genomics research.