Genomics scientists are warning that most of the global human population is still forced to use medicines and treatments that were developed without their genomics in mind, as too little progress has been made to collect genomic data from diverse populations for research purposes.
A study led by Dr Manuel Corpas, a Senior Lecturer in Genomics at the University of Westminster, calls on organisations, industry leaders and policymakers to tackle overlooked population gaps within biomedical data to make global healthcare more equitable and help communities across the globe receive precise and personalised medical treatment.
Over the last 20 years, public databases have gathered a large amount of genomic data to help researchers better understand genetic diseases. However, 90% of this data comes from populations in Europe, America and the UK. This leaves people in specific regions underrepresented, slowing progress in developing precision medicine tailored to their needs.
To combat this issue the researchers have provided a detailed analysis of how different populations are represented in datasets used in human genomics research and highlight what changes need to be made to extend the benefits of human genomics to everyone.
Without being represented in genomics research, people cannot have access to the most effective medicines and treatment, leaving them with an increased chance of side effects, bad health or death.
The report also sheds light on the additional benefits of the genetic testing of underrepresented communities, such as in the Amazon. It can make it easier for people to access their genetic information without visiting a healthcare provider or getting a prescription. Bringing genomic research to these communities also gives people the chance to learn more about their heritage and potential health risks that come with their family trees, as well as increases public awareness and knowledge about the field of genomics. Finally, partnering with local communities gives researchers the opportunity to understand unique genetic adaptations and peoples’ specific needs, values and desires when it comes to health support.
There are some current projects that are working well to widen diversity in genomics and support the global community. The All of Us Project was launched by the National Institutes of Health to actively recruit participants from a variety of ancestries across the US to help build one of the most diverse health databases in the world. Additionally in Latin America, the Mexico City Prospective Cohort Study and the Peruvian Genome Project are providing insights into the unique health challenges faced by native indigenous communities.
Dr Corpas said: “This study is a stark reminder for those of us working for diversity of health data and equity of clinical outcomes. Currently there’s no agreement nor target as to what we mean by diversity. Everyone talks about diversity but there is no clear definition of what we mean by it. Unless we have a clear/agreed target we’ll never address current health disparities.”
Published by the science publisher Cell Press and led by Dr Corpas, the study was a collaboration between the University of Westminster, University of California, Davis, Queen Mary University of London and Queensland University of Technology, Australia.
This report directly contributes to the United Nations Sustainable Development Goals (SDG) 3: Good Health and Wellbeing, 10: Reduced Inequalities and17: Partnerships for the Goals. Since 2019, the University of Westminster has used the SDGs holistically to frame strategic decisions to help students and colleagues fulfil their potential and contribute to a more sustainable, equitable and healthier society.
Read the full study.
Find out more about the Genomics and Infectious Diseases Research Group at the University of Westminster.
Related articles
