Evidence map›Paper›PMID 38365612›Full record

ArticleBMC public health2024

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 and 6 more

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Article in BMC public health, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

2 citing papers in PubMed.

  1. Review
  2. Periodontal diseases in Africa.Periodontology 2000 · 2025
    Review
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

16 authors.

Abimbola M OladayoDepartment of Oral Pathology, Radiology and Medicine, College of Dentistry, University of Iowa, Iowa City, IA, USA. Abimbola-oladayo@uiowa.edu.
Oluwakemi OdukoyaDepartment of Community Health and Primary Care, College of Medicine, University of Lagos, Lagos, Nigeria.
Veronica SuleDepartment of Operative Dentistry, College of Dentistry, University of Iowa, Iowa City, IA, USA.
Ikenna MolobeDepartment of Community Health and Primary Care, College of Medicine, University of Lagos, Lagos, Nigeria.
Tamara BuschIowa Institute of Oral Health Research, University of Iowa, Iowa City, IA, USA.
Babatunde AkoduDepartment of Community Health and Primary Care, College of Medicine, University of Lagos, Lagos, Nigeria.
Wasiu L AdeyemoDepartment of Oral and Maxillofacial Surgery, University of Lagos, Lagos, Nigeria.
Lord J J GowansKomfo Anokye Teaching Hospital and Kwame Nkrumah University of Science and Technology, Kumasi, Ghana.
Mekonen EsheteSchool of Medicine, Department of Surgery, Addis Ababa University, Addis Ababa, Ethiopia.
Azeez AladeDepartment of Oral Pathology, Radiology and Medicine, College of Dentistry, University of Iowa, Iowa City, IA, USA.
Waheed AwotoyeDepartment of Oral Pathology, Radiology and Medicine, College of Dentistry, University of Iowa, Iowa City, IA, USA.
Adebowale A AdeyemoNational Human Genomic Research Institute, Bethesda, MD, USA.
Peter A MosseyDepartment of Orthodontics, University of Dundee, Dundee, UK.
Anya E R PrinceCollege of Law, University of Iowa, Iowa City, USA.
Jeffrey C MurrayDepartment of Pediatrics, University of Iowa, Iowa City, IA, USA.
Azeez ButaliDepartment of Oral Pathology, Radiology and Medicine, College of Dentistry, University of Iowa, Iowa City, IA, USA. azeez-butali@uiowa.edu.

Funding

University of Iowa Institutional Training Program in Oral Health ResearchT90DE023520 · NIDCR · UNIVERSITY OF IOWA · PI STEVEN M. LEVY · 2013 to 2026
$5.6M
Whole Genome Sequencing for Orofacial Clefts, Incidental Findings and Role of Community GatekeepersR01DE028300 · NIDCR · UNIVERSITY OF IOWA · PI BUTALI, AZEEZ · 2020 to 2024
$3.9M
Elucidating Cleft Etiology Employing Multiplex and Twin Families (ElCEEMuTF)K43DE029427 · NIDCR · KWAME NKRUMAH UNIVERSITY/SCIENCE/TECH · PI GOWANS, LORD JEPHTHAH JOOJO · 2019 to 2023
$529k
NIDCR NIH HHS DE023520NIDCR NIH HHS DE028300NIDCR NIH HHS K43 DE029427NIDCR NIH HHS R01 DE028300NIDCR NIH HHS T90 DE023520
6 · The paper itself

Abstract

backgroundA 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.

methodsTwenty-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.

resultsThree 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.

conclusionsIncorporating 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.

Indexed as

Cleft LipCleft PalateFocus GroupsGenomicsHumansNigeriaQualitative ResearchAfricaCommunityEthical issuesGatekeepersGenomics researchHealth equityOrofacial cleftsReturn of results

Identifiers

PMID38365612
PMCPMC10873930

What OpenQuestion holds

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LicenceCC BY
Read underepoch 390

Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.