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. 2025 May 6;20(5):e0292906.
doi: 10.1371/journal.pone.0292906. eCollection 2025.

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

Ayodele Jegede  1 , Olubukola Balogun  1 , Olorunyomi Felix Olorunsogbon  2   3 , Michelle Nichols  4 , Joshua Akinyemi  5 , Carolyn Jenkins  4 , Mayowa Ogunronbi  2 , Arti Singh  6 , Reginald Obiako  7 , Kolawole Wahab  8 , Abiodun Bello  8 , Albert Akpalu  9 , Fred S Sarfo  10 , Lukman F Owolabi  11 , Babatunde Ojebuyi  12 , Muyiwa Adigun  13 , Dorcas Olujobi  2 , Rabiu Musbahu  11 , Musibau Titiloye  3 , Ibukun Afolami  14 , Benedict Calys-Tagoe  9 , Ezinne Uvere  15 , Ruth Laryea  9 , Adekunle Fakunle  15 , Osi Adeleye  16 , Deborah Adesina  16 , Nathaniel Mensah  10 , Wisdom Oguike  7 , Nathaniel Coleman  9 , Sunday Adeniyi  8 , Lanre Omotoso  8 , Shadrack Asibey  10 , Lois Melikam  7 , Jibril Yusuf  11 , Abdullateef Gbenga  7 , Aliyu Mande  11 , Muhammed Uthman  8 , Rajesh N Kalaria  2   17 , Mayowa Owolabi  15   18 , Bruce Ovbiagele  19 , Oyedunni Arulogun  3 , Rufus O Akinyemi  2   15   18
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Research participants' perception of ethical issues in stroke genomics and neurobiobanking research in Africa

Ayodele Jegede et al. PLoS One. .

Abstract

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.

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Conflict of interest statement

The authors have declared that no competing interests exist.

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