Research participants' perception of ethical issues in stroke genomics and neurobiobanking research in Africa.

Background: There is a growing interest in stroke genomics and neurobiobanking research in Africa. These raise several ethical issues, such as consent, re-use, data sharing, storage, and incidental result of biological samples. Despite the availability of ethical guidelines developed for research in Africa, there is paucity of information on how the research participants' perspectives could guide the research community on ethical issues in stroke genomics and neurobiobanking research. To explore African research participants' perspectives on these issues, a study was conducted at existing Stroke Investigation Research and Education Network (SIREN) sites in Nigeria and Ghana. Method: Using an exploratory design, twenty-eight Focus Group Discussions (FGDs) sessions were conducted with stroke survivors (n=7), caregivers(n=7), stroke - free controls(n=7), and Community Advisory Board members(n=7). Data were collected using an interview guide. Interviews were conducted in English and indigenous languages of the community, audio recorded, and transcribed verbatim. Data were analyzed using NVivo (March, 2020) Software. Result: Results revealed that stroke genomics and neurobiobanking research in Africa require researchers' direct attention to ethical issues. Concerns were raised about understanding, disclosure and absence of coercion as components of true autonomous decision making in research participation. Participants argued that the risk and benefits attached to participation should be disclosed at the time of recruitment. Fears around data sharing were voiced as adherence to the principle of privacy and confidentiality were of paramount importance to participants. The preference was to receive the results of incidental findings with no stigma attached from society. Conclusion: Research participants' perspectives are a vital aspect of community engagement in stroke genomics and neurobiobanking research. Findings from this study suggest that research participants are interested in these fields of research in Africa if their concerns about ethical issues are appropriately addressed within the research framework.

Organized multi-disciplinary stroke team care improves acute stroke outcomes in resource limited settings; Results of a retrospective study from a Nigerian tertiary hospital.

BACKGROUND: Evidence for the impact of organized stroke multidisciplinary teams (MDTs) on outcomes in Africa is sparse. AIM: To compare stroke outcomes, before and after the establishment (September 16, 2016) of a pioneer MDT at a tertiary hospital in southern Nigeria. METHODS: Using a retrospective, observational study design, the in-patient record of all stroke patients admitted between September 2014 to September 2018 was retrieved and rigorously reviewed. 155 patients seen 2 years before the MDT were compared with 169 stroke patients seen 2 years after the MDT. Stroke severity at admission and functioning at discharge were assessed using the Stroke Levity Scale (SLS) and the modified Rankin scale (mRS). RESULTS: Mean ages (in years) were 60 pre-MDT vs 59.57 post MDT (p = 0.754). There were more males, 51% pre-MDT vs 54.2% post MDT (p = 0.565). SLS and mRS were not significantly different; severe SLS and mRS pre-MDT, 52.9% vs post-MDT, 49.4% (p = 0.727) and pre-MDT 19.4% vs post-MDT 19.5% (p = 0.685) respectively. More post-MDT patients were discharged alive, pre-MDT,56.8% vs 79.2% post MDT (p < 0.001); had swallow tests, pre-MDT 9.23% vs post-MDT 33.5% (p < 0.001); on secondary prevention, pre-MDT 67.7% vs post-MDT 78.9% (p = 0.023); had more clinic visits, pre-MDT,0.7% vs post-MDT 38.3% (p < 0.001). MDT was independently associated with lower in-hospital mortality on multivariable regression, adjusted odds ratio (OR) (95% Confidence interval CI) 0.17 (0.09-0.32). CONCLUSION: Our results suggest that an organized MDT may improve acute outcomes and reduce mortality in resource constrained settings where there may be no stroke units. These findings need further prospective validation.

Unraveling the Ethical, Legal, and Social Implications of Neurobiobanking and Stroke Genomic Research in Africa: A Study Protocol of the African Neurobiobank for Precision Stroke Medicine ELSI Project.

The ethical, legal, and social implications (ELSI) of emerging neurobiobanks and data resources are unclear in an African scientific landscape with unique cultural, linguistic, and belief systems. The overarching goal of the African Neurobiobank for Precision Stroke Medicine-ELSI Project is to identify, examine, and develop novel approaches to address ELSI issues of biobanking and stroke genomic research in sub-Saharan Africa (SSA). To accomplish the goal we will (1) explore knowledge, attitude, perceptions, barriers, and facilitators influencing ELSI issues related to biobanking and stroke genomic research; (2) use information obtained to craft a community intervention program focused on ELSI issues; and (3) build capacity and careers related to genomics and biobanking for effective client/community engagement while enhancing regulatory, governance, and implementation competences in biobanking science in SSA. A community-based participatory research and mixed-methodological approach, focused on various levels of the social ecological model, will be used to identify and examine relevant ELSI issues. Contextual intervention tools, platforms, and practices will be developed to enhance community understanding and participation in stroke biobanking and genomics research activities while facilitating enduring trust, and equitable and fair utilization of biobanking resources for genetic and trans-omics research. A concurrent capacity building program related to genetic counseling and biobanking will be implemented for early career researchers. The huge potential for neurobiobanking and genomics research in Africa to advance precision medicine applicable to stroke and other neurological disorders requires addressing ELSI challenges while building sustainable research, career, and regulatory capacities in trans-omics and biobanking science.