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. ### Competing Interest Statement The authors have declared no competing interest. ### Funding Statement ROA is supported by the African Neurobiobank for Precision Stroke Medicine ELSI Project (U01HG010273), Recruitment and Retention for Alzheimer's Disease Diversity Genetic Cohorts in the ADSP (READD-ADSP) (U19AG074865), and the Origins of Alzheimers Disease in African Americans (R01AG072547) from the National Institutes of Health. MO is supported by grants from the National institute of Health, the SIREN Study (U54HG007479) and the Systematic Investigation of Blacks with Stroke using Genomics (SIBS Genomics) Study (R01NS107900). ROA is further supported by the UK Royal Society/African Academy of Sciences (FLR/R1/191813, FCG/R1/201034) and the Alzheimer Association (GBHI ALZ UK-21- 24204). The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript. ### Author Declarations I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained. Yes The details of the IRB/oversight body that provided approval or exemption for the research described are given below: All the seven sites obtained ethical approval from their institutional ethics review committee before the commencement of the study. University of Ibadan, Oyo State, Nigeria (UI/EC/18/0641) Federal Medical Centre, Abeokuta, Ogun State, Nigeria (FMCA/470/HREC/04/2019/01) Murtala Muhammad Specialist Hospital, Kano State, Nigeria (MOH/OFF/797/TI/1264) Ahmadu Bello University Teaching Hospital, Zaria, Kaduna State, Nigeria (ABUTHZ/HREC/E25/2018) University of Ilorin Teaching Hospital, Kwara State, Nigeria (UITH/CAT/189/19/007) University of Ghana College of Health Sciences, Accra, Ghana (EPRC/FEB/2021) Kwame Nkrumah University of Science and Technology, Kumasi, Ghana (CHRPE/AP/262/20). Written informed consent was obtained from each FGD participant. Participants were informed in detail about the study. Participation in this study was voluntary. The study participants were informed that they could withdraw from the study at any stage without any consequences to their benefiting from the outcome of the study, if any. To ensure confidentiality of study participants’ identity, numeric codes were allotted to each participant and only researchers had access to the data. Identifiers were removed from the transcripts. I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals. Yes I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance). Yes I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable. Yes All relevant data are within the manuscript and its Supporting Information files.