ArticleAJOB empirical bioethics
Parents and Provider Perspectives on the Return of Genomic Findings for Cleft Families in Africa.
Article in AJOB empirical bioethics. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers.
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Who cites it
4 citing papers in PubMed.
- Return of health research findings in Nigeria-perspective of potential research participants.BMC medical ethics · 2026Article
- Return of health research findings in Nigeria-perspective of potential research participants.Research square · 2025Article
- Global, regional, and national burden of orofacial clefts, 1990-2021: an analysis of data from the global burden of disease study 2021.Frontiers in medicine · 2025Article
- Spotlighting Structural Constraints on Decisions About Participation in Genomic and Precision Medicine.AJOB empirical bioethicsArticle
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Authors and funding
14 authors.
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Abstract
backgroundInadequate knowledge among health care providers (HCPs) and parents of affected children limits the understanding and utility of secondary genetic findings (SFs) in under-represented populations in genomics research. SFs arise from deep DNA sequencing done for research or diagnostic purposes and may burden patients and their families despite their potential health importance. This study aims to evaluate the perspective of both groups regarding SFs and their choices in the return of results from genetic testing in the context of orofacial clefts.
methodsUsing an online survey, we evaluated the experiences of 252 HCPs and 197 parents across participating cleft clinics in Ghana and Nigeria toward the return of SFs across several domains.
resultsOnly 1.6% of the HCPs felt they had an expert understanding of when and how to incorporate genomic medicine into practice, while 50.0% agreed that all SFs should be returned to patients. About 95.4% of parents were willing to receive all the information from genetic testing (including SFs), while the majority cited physicians as their primary information source (64%).
conclusionsOverall, parents and providers were aware that genetic testing could help in the clinical management of diseases. However, they cited a lack of knowledge about genomic medicine, uncertain clinical utility, and lack of available learning resources as barriers. The knowledge gained from this study will assist with developing guidelines and policies to guide providers on the return of SFs in sub-Saharan Africa and across the continent.
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