Tsey Irene Honam, Selormey Pamela Emefa, Ganle John, Akweongo Patricia, Tindana Paulina
Department of Health Policy, Planning and Management, School of Public Health, College of Health Sciences, University of Ghana, Accra, Ghana.
University of Health and Allied Sciences, Ho, Volta Region, Ghana.
BMC Med Ethics. 2025 Jul 4;26(1):87. doi: 10.1186/s12910-025-01251-z.
Deliberative engagement offers an opportunity for communities to provide informed opinions on complex ethical, legal, and social issues in genomic research and biobanking. However, its use is limited, particularly in resource-constrained settings like Ghana. This study examines the influence of deliberative engagement on participants’ awareness of genomic research and attitudes towards data sharing.
This research forms part of a larger mixed-methods study exploring deliberative methods for community engagement in genomics research in Ghana. Using a quasi-experimental one-group pretest-posttest design, 66 participants completed a baseline survey assessing awareness of genomic research and attitudes toward data sharing. Following this, a deliberative workshop was conducted with facilitated discussions. Post-engagement surveys measured changes in awareness and attitudes, and Fisher’s exact test was used to assess statistical significance.
Respondents (aged 47–67 years; mean 57, SD 4.2) were predominantly male (65%), with 18% having no formal education. Significant improvements were observed in participants’ awareness of genomic research (51–90%, = 0.001) and confidence in consent processes ensuring privacy and confidentiality. Other variables, including willingness to share samples and trust in data governance, showed no significant change.
This study demonstrates that deliberative engagement could enhance awareness of genomic research and offers a promising approach to informing, educating, and fostering dialogue on complex ethical issues in genomic research and biobanking, particularly in resource-limited settings.
Not applicable.
The online version contains supplementary material available at 10.1186/s12910-025-01251-z.
协商参与为社区提供了一个机会，使其能够就基因组研究和生物样本库中复杂的伦理、法律和社会问题发表明智的意见。然而，其应用有限，尤其是在加纳这样资源有限的环境中。本研究考察了协商参与对参与者基因组研究意识以及数据共享态度的影响。
本研究是一项更大规模的混合方法研究的一部分，该研究探索了加纳社区参与基因组研究的协商方法。采用准实验单组前后测设计，66名参与者完成了一项基线调查，评估其对基因组研究的认识和对数据共享的态度。在此之后，举办了一次有引导讨论的协商研讨会。参与后调查测量了认识和态度的变化，并使用Fisher精确检验评估统计学意义。
受访者年龄在47 - 67岁之间（平均57岁，标准差4.2），男性占主导（65%），18%没有接受过正规教育。参与者对基因组研究的认识（从51%提高到90%，P = 0.001）以及对确保隐私和保密的同意程序的信心有显著提高。其他变量，包括样本共享意愿和对数据治理的信任，没有显著变化。
本研究表明，协商参与可以提高对基因组研究的认识，并为就基因组研究和生物样本库中复杂的伦理问题提供信息、开展教育和促进对话提供了一种有前景的方法，特别是在资源有限的环境中。
不适用。
在线版本包含可在10.1186/s12910 - 025 - 01251 - z获取的补充材料。
