Qualitative study of comprehension of heritability in genomics studies among the Yoruba in Nigeria
Date
2020-12-09Journal
BMC Medical EthicsPublisher
BioMed Central LtdType
Article
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Background: With growth of genomics research in Africa, concern has arisen about comprehension and adequacy of informed consent given the highly technical terms used in this field. We therefore decided to study whether there are linguistic and cultural concepts used to communicate heritability of characters, traits and diseases in an indigenous African population. Methods: We conducted Focus Group Discussions among 115 participants stratified by sex, age and socio-economic status and Key Informant Interviews among 25 stakeholders and Key Opinion Leaders among Yoruba living in Ibadan, Nigeria. We used Atlas-ti v.8.3.17 software to analyze the data, using thematic approach. Results: The study participants identified several linguistic and cultural concepts including words, proverbs, and aphorisms that are used to describe heritable characters, traits and diseases in their local dialect. These included words that can be appropriated to describe dominant and recessive traits, variations in penetrance and dilution of strength of heritable characteristics by time and inter-marriage. They also suggested that these traits are transmitted by “blood”, and specific partner’s blood may be stronger than the other regardless of sex. Conclusions: Indigenous Yoruba populations have words and linguistic concepts that describe the heritability of characters, traits and diseases which can be appropriated to improve comprehension and adequacy of informed consent in genomics research. Our methods are openly available and can be used by genomic researchers in other African communities. Copyright 2020, The Author(s).Keyword
ComprehensionFGD
Genomics studies
Heritability
Informed consent
KII
Linguistic concepts
Yoruba indigenous communities
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http://hdl.handle.net/10713/14544ae974a485f413a2113503eed53cd6c53
10.1186/s12910-020-00567-2
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