Qualitative study of comprehension of heritability in genomics studies among the Yoruba in Nigeria
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RESEARCH ARTICLE
Qualitative study of comprehension of heritability in genomics studies among the Yoruba in Nigeria Rasheed O. Taiwo1, John Ipadeola1, Temilola Yusuf1, Faith Fagbohunlu1, Gbemisola Jenfa1, Sally N. Adebamowo1,2, Clement A. Adebamowo1,2,3,4* and the Indigene Study as part of the H3Africa Consortium
Abstract 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. Keywords: Linguistic concepts, Heritability, Comprehension, Informed consent, Genomics studies, FGD, KII, Yoruba indigenous communities Background The number of genomics research projects in Sub-Saharan Africa (SSA) is growing thanks to initiatives such as the Human Heredity and Health in Africa (H3Africa) Consortium. The H3Africa Consortium is a joint *Correspondence: [email protected] 1 Division of Research Ethics, Center for Bioethics and Research, Ibadan, Nigeria Full list of author information is available at the end of the article
initiative of the African Society of Human Genetics (AfSHG), United States’ National Institutes of Health (NIH) and Wellcome Trust designed to “harness genomic technologies towards improving health in Africa” while contributing to global health [1–15]. H3Africa also supports development of genomics research infrastructure and builds African capacity for genomics research through provision of training in diverse fields [16–29]. The outcome of this initiative is an increase in the number of research projects focused on the genomic bases
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