BRIDGING LINGUISTIC AND CULTURAL DIVIDES IN PSYCHIATRIC GENOMICS RESEARCH: LESSONS FROM UGANDA

Abstract

Psychiatric genomics research tools frequently depend on terminology and notions that are predominantly derived from Western viewpoints, specifically designed for populations speaking English in Europe and the United States of America. Nevertheless, there is an increasing interest in incorporating African populations into genetic studies, as African genetic data possess significant potential for enhancing discovery in psychiatric genetics research. However, this undertaking has unique difficulties, including inefficiently conveying intricate genetic and psychiatric ideas and terminology to participants using their native African languages. The absence of obvious counterparts for terms such as "trauma" or "genome" necessitates the need for unique strategies to overcome linguistic barriers.

In 2011, we established the Uganda Genome Resource (UGR) – a well-characterized genomic database with a range of phenotypes for communicable and non-communicable diseases and risk factors generated from the Uganda General Population Cohort (GPC), a population-based open cohort. The UGR comprises genotype data on ∼5,000 and whole-genome sequence data on ∼2,000 Ugandan GPC individuals from 10 ethno-linguistic groups. We have since extended UGR to include studies focusing primarily on mental health conditions including major depressive disorder, post-traumatic stress disorder, generalized anxiety disorder, alcohol misuse and suicidality, among others.

To mitigate against the barrier poised by research tools which were developed in a foreign language to the participants, first, we engage the service of a professional linguistic translator to ensure accurate translation of all study materials. Additionally, we provide cultural sensitivity training to researchers to ensure respectful and ethical interactions with participants from diverse ethno-linguistic backgrounds. Secondly, following the translated study material, we set up a series of workshop including mental health experts and leading psychiatric geneticists and local scientists to agree on the translated content. Thirdly, we ask an independent local scientist to conduct a reverse translation of the study materials to ensure accuracy and consistency in the translated versions. This thorough process helps to minimize any potential misunderstandings or misinterpretations that may arise during the research study.