Qualitative study of comprehension of heritability in genomics studies among the Yoruba in Nigeria

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.

Bridging the gap in African biodiversity genomics and bioinformatics

“…Learning in local languages, such as Swahili, would glue down knowledge learned in the participant's native environment, enable a deeper understanding of concepts and help link biodiversity genomic practices to local knowledge [12][13][14][15] . For instance, in a focused group discussion among 115 participants from Yoruba populations in West Africa, it was evident that words that describe the heritability of characters, traits and diseases, such as horses inheriting the ability to race (ere sisa la fi bi eshin) and the heritability of sickle cell disease (arunmolegun), exist in the Yoruba language; this can be used to improve the understanding of prior informed consent in genomics research 16 .…”

“…15 Department of Agriculture, University of Mauritius, Reduit, Mauritius. 16 Bioinformatics Lab, Pasteur Institute of Tunis, Tunis, Tunisia. 17 Laboratory of Transmission, Control and Immunobiology of Infections, Pasteur Institute of Tunis, Tunis, Tunisia.…”