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

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

doi:10.1186/s12889-024-17987-z

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

Journal article

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

Abimbola M Oladayo, Oluwakemi Odukoya, Veronica Sule, Ikenna Molobe, Tamara Busch, Babatunde Akodu, Wasiu L Adeyemo, Lord J J Gowans, Mekonen Eshete, Azeez Alade, …

BMC public health, Vol.24(1), 507

02/17/2024

DOI: 10.1186/s12889-024-17987-z

PMCID: PMC10873930

PMID: 38365612

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Abstract

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. 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. 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. 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.

Africa

Gatekeepers

Genomics research

Health equity

Orofacial clefts

Ethical issues

Return of results

Community

Details

Title: Subtitle: Perceptions and beliefs of community gatekeepers about genomic risk information in African cleft research
Creators: Abimbola M Oladayo - Iowa Institute of Oral Health Research, University of Iowa, Iowa City, IA, USA. Abimbola-oladayo@uiowa.edu
Oluwakemi Odukoya - University of Lagos
Veronica Sule - University of Iowa
Ikenna Molobe - University of Lagos
Tamara Busch - Iowa Institute of Oral Health Research, University of Iowa, Iowa City, IA, USA
Babatunde Akodu - University of Lagos
Wasiu L Adeyemo - University of Lagos
Lord J J Gowans - Kwame Nkrumah University of Science and Technology
Mekonen Eshete - Addis Ababa University
Azeez Alade - Iowa Institute of Oral Health Research, University of Iowa, Iowa City, IA, USA
Waheed Awotoye - Iowa Institute of Oral Health Research, University of Iowa, Iowa City, IA, USA
Adebowale A Adeyemo - National Human Genome Research Institute
Peter A Mossey - University of Dundee
Anya E R Prince - University of Iowa
Jeffrey C Murray - University of Iowa
Azeez Butali - Iowa Institute of Oral Health Research, University of Iowa, Iowa City, IA, USA. azeez-butali@uiowa.edu
Resource Type: Journal article
Publication Details: BMC public health, Vol.24(1), 507
DOI: 10.1186/s12889-024-17987-z
PMID: 38365612
PMCID: PMC10873930
NLM abbreviation: BMC Public Health
eISSN: 1471-2458
Grant note: DE028300 / NIDCR NIH HHS DE023520 / NIDCR NIH HHS
Language: English
Date published: 02/17/2024
Academic Unit: Oral Pathology, Radiology and Medicine; Anatomy and Cell Biology; Stead Family Department of Pediatrics; Epidemiology; Pediatric Dentistry; Craniofacial Anomalies Research Center; Dental Research; Law Faculty
Record Identifier: 9984559772002771

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