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. 2025 Aug;34(8):108378.
doi: 10.1016/j.jstrokecerebrovasdis.2025.108378. Epub 2025 Jun 14.

Communicating the ethical, legal, and social issues in neurobiobanking and stroke genomic research in Africa: Project intervention tools development and evaluation procedures

Babatunde R Ojebuyi  1 , Ibukun Afolami  2 , Muyiwa Adigun  3 , Arti Singh  4 , Carolyn Jenkins  5 , Michelle Nichols  6 , Kolawole Wahab  7 , Abiodun Bello  8 , Fred S Sarfo  9 , Lukman F Owolabi  10 , Rabiu Musbahu  11 , Reginald Obiako  12 , Albert Akpalu  13 , Mayowa Ogunronbi  14 , Olorunyomi Olorunsogbon  15 , Benedict Calys-Tagoe  16 , Deborah Adesina  17 , Nathaniel Coleman  18 , Abdullateef G Sule  19 , Aliyu Mande  20 , Muhammed Uthman  21 , Musibau Titiloye  22 , Ezinne Uvere  23 , Odunola Bukola  24 , Ruth Laryea  25 , Adekunle Fakunle  26 , Osi Adeleye  27 , Nathaniel Mensah  28 , Jibril Yusuf  29 , Sunday Adeniyi  30 , Shadrack Asibey  31 , Lanre Omotoso  32 , Lois Melikam  33 , Dorcas Olujobi  34 , Wisdom Oguike  35 , Joshua Akinyemi  36 , Ayodele Jegede  37 , Rajesh Kalaria  38 , Bruce Ovbiagele  39 , Mayowa Owolabi  40 , Oyedunni Arulogun  41 , Rufus Akinyemi  42
Affiliations

Communicating the ethical, legal, and social issues in neurobiobanking and stroke genomic research in Africa: Project intervention tools development and evaluation procedures

Babatunde R Ojebuyi et al. J Stroke Cerebrovasc Dis. 2025 Aug.

Abstract

Background and aim: Issues concerning appropriate Community Engagement (CE) and communication of research outcomes with stakeholders have received the attention of scholars in different sub-fields of clinical research. However, given its novel nature, especially in Sub-Saharan Africa, CE addressing the ethical, legal, and social implications (ELSI) of neurobiobanking and stroke genomic research has not received much scholarly attention. Therefore, this study was designed as a pioneering effort to report the procedures for developing and evaluating intervention tools for the CE component of the African Neurobiobank for Precision Stroke Medicine ELSI Project.

Methods: A community-based participatory research design was adopted. The intervention tools we developed include general advocacy, educative, and training videos focusing on neurobiobanking, stroke genomics and precision stroke medicine in Africa; infographics; and a policy brief. An adapted Doak and Doak's Suitability Assessment Measure (SAM), the Agency for Healthcare Research and Quality (AHRQ) Patient Education Materials Assessment Tool (PEMAT), and semi-structured interview questions based on Willis' Cognitive Interviewing Techniques were used to evaluate the suitability, actionability, understandability and cultural appropriateness of the tools.

Results: PEMAT mean percentage scores of 71.4 % for actionability and 82.4 % for understandability, and a SAM suitability score of 67.9 % were reported for the videos. Identified weaknesses captured in seven thematic areas after assessment analysis by experts and community members guided the final refinement of the tools.

Conclusion: The overall reviewers' reports and evaluation scores indicate that the intervention tools are generally suitable for community deployment in sub-Saharan Africa. Clinical researchers must partner with key stakeholders, define policy objectives and desired behaviour change, and develop appropriate persuasive communication strategies and tools for community engagement.

Keywords: Community Engagement; Community-Based Participatory Research, ELSI; Health Literacy; Neurobiobanking in Africa; Persuasive Communication; Precision Stroke Medicine.

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Conflict of interest statement

Declaration of competing interest The authors acknowledge receipt of the following financial support for the research, authorship, and/or publication of this article: The African Neurobiobank for Precision Stroke Medicine ELSI Project, the SIREN Study, and the Systematic Investigation of Blacks with Stroke using Genomics (SIBS Genomics) Study are supported by Grants U01HG010273, U54HG007479, and R01NS107900, respectively, from the National Institutes of Health as part of the H3Africa Consortium. The corresponding author Rufus O. Akinyemi is further supported by the fellowship FLAIR FLR/R1/191813, FCG/R1/201034) funded by the UK Royal Society and the African Academy of Sciences and the Alzheimer Association and Global Brain Health Institute (GBHI ALZ UK-21- 24204). However, we declare that we have no known competing financial interests, obligations or personal relationships with any individuals or institutions that could potentially compromise or influence the work reported in this article.

Figures

Fig. 1:
Fig. 1:
Sample image of the brain from the Video Series I (the need for Neurobiobanking to improve stroke research)
Fig. 2:
Fig. 2:
Sample image from the Video Series V (Stroke Genomics and Precision Medicine)
Fig. 3:
Fig. 3:
Sample image from infographics summarising some key findings from the primary study
Fig. 4:
Fig. 4:
Sample image from the policy brief summarising the key findings from the primary study
See this image and copyright information in PMC

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