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

Rasheed O Taiwo,The Indigene Study As Part Of The H3Africa Consortium ,Faith Fagbohunlu,Sally N Adebamowo,Temilola Yusuf,Gbemisola Jenfa,John Ipadeola,Clement A Adebamowo

doi:10.1186/s12910-020-00567-2

Rasheed O Taiwo, The Indigene Study As Part Of The H3Africa Consortium + Show 6 more

Open Access

https://doi.org/10.1186/s12910-020-00567-2

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Abstract

BackgroundWith 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.MethodsWe 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.ResultsThe 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.ConclusionsIndigenous 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.

Highlights

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
The implementation of genomics studies in Sub-Saharan Africa (SSA) has been accompanied by significant ethical concerns including questions about the quality and adequacy of informed consent, community engagement, dignitary harms, risk of stigmatization and discrimination arising from the outcome of genomics research [35,36,37]
While some components of the informed consent process are similar across all research studies and words that most people are familiar with are often used, genomics research utilizes several technical terms or describes technical processes that community members may not be aware of and this increases the likelihood of inadequate comprehension

Summary

Introduction

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. The presentation of technical terms used in genomics research during the informed consent process and the adequacy of comprehension of such terms by research participants in low-resource countries is an important ethical and scientific question [38]. Local language equivalents for these terms do not exist in many societies, those in low and middle income countries (LMIC) [40] These societies may not be entirely ignorant of the concepts expressed by these genomics terms

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