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BMC Public Health
Published in: BMC Public Health 1/2024

Open Access 01-12-2024 | Research

Perceptions and beliefs of community gatekeepers about genomic risk information in African cleft research

Authors: Abimbola M. Oladayo, Oluwakemi Odukoya, Veronica Sule, Ikenna Molobe, Tamara Busch, Babatunde Akodu, Wasiu L. Adeyemo, Lord J. J. Gowans, Mekonen Eshete, Azeez Alade, Waheed Awotoye, Adebowale A. Adeyemo, Peter A. Mossey, Anya E. R. Prince, Jeffrey C. Murray, Azeez Butali

Published in: BMC Public Health | Issue 1/2024

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Abstract

Background

A fundamental ethical issue in African genomics research is how socio-cultural factors impact perspectives, acceptance, and utility of genomic information, especially in stigmatizing conditions like orofacial clefts (OFCs). Previous research has shown that gatekeepers (e.g., religious, political, family or community leaders) wield considerable influence on the decision-making capabilities of their members, including health issues. Thus, their perspectives can inform the design of engagement strategies and increase exposure to the benefits of genomics testing/research. This is especially important for Africans underrepresented in genomic research. Our study aims to investigate the perspectives of gatekeepers concerning genomic risk information (GRI) in the presence of OFCs in a sub-Saharan African cohort.

Methods

Twenty-five focus group discussions (FGDs) consisting of 214 gatekeepers (religious, community, ethnic leaders, and traditional birth attendants) in Lagos, Nigeria, explored the opinions of participants on genomic risk information (GRI), OFC experience, and the possibility of involvement in collaborative decision-making in Lagos, Nigeria. Transcripts generated from audio recordings were coded and analyzed in NVivo using thematic analysis.

Results

Three main themes—knowledge, beliefs, and willingness to act—emerged from exploring the perspective of gatekeepers about GRI in this group. We observed mixed opinions regarding the acceptance of GRI. Many participants believed their role is to guide and support members when they receive results; this is based on the level of trust their members have in them. However, participants felt they would need to be trained by medical experts to do this. Also, religious and cultural beliefs were crucial to determining participants’ understanding of OFCs and the acceptance and utilization of GRI.

Conclusions

Incorporating cultural sensitivity into public engagement could help develop appropriate strategies to manage conflicting ideologies surrounding genomic information in African communities. This will allow for more widespread access to the advances in genomics research in underrepresented populations. We also recommend a synergistic relationship between community health specialists/scientists, and community leaders, including spiritual providers to better understand and utilize GRI.
Appendix
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Metadata
Title
Perceptions and beliefs of community gatekeepers about genomic risk information in African cleft research
Authors
Abimbola M. Oladayo
Oluwakemi Odukoya
Veronica Sule
Ikenna Molobe
Tamara Busch
Babatunde Akodu
Wasiu L. Adeyemo
Lord J. J. Gowans
Mekonen Eshete
Azeez Alade
Waheed Awotoye
Adebowale A. Adeyemo
Peter A. Mossey
Anya E. R. Prince
Jeffrey C. Murray
Azeez Butali
Publication date
01-12-2024
Publisher
BioMed Central
Published in
BMC Public Health / Issue 1/2024
Electronic ISSN: 1471-2458
DOI
https://doi.org/10.1186/s12889-024-17987-z

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