Introduction
A new initiative has been announced by Meharry Medical College in the U.S. that aims to create the world’s largest database of genomes from people of African descent, filling a huge gap in scientific research. Meharry Medical College, an HBCU (historically Black college or university), has teamed up with four major biopharma companies (Regeneron, AstraZeneca, Novo Nordisk, and Roche) to recruit 500,000 people from Africa and African Americans to collect data on their DNA for future studies.
What is the initiative called?
The initiative is called Together for CHANGE (Together for Changing Healthcare for People of African Ancestry through InterNational Genomics and Equity), and is being led by Meharry’s Diaspora Human Genomics Institute (DGHI) in partnership also with academic institutions in Africa, such as the University of Zambia.
How will the research be funded?
The biopharma companies will contribute $80 million to the project altogether, $30 million of which will go towards efforts to support Black scientists in the U.S. and Africa, such as research funding, grants, and graduate programs. The DGHI will also work in collaboration with local Black communities to avoid the exploitation of Black patients that has historically occurred in the medical field. The initiative will also include an ethics advisory committee consisting of experts such as an ethicist from Africa, a faith leader, and specialists on what is culturally appropriate.
Why is this a positive step?
The project marks a huge step in diversifying scientific genetic studies, the participants of which people of African ancestry currently only make up less than 0.5%. This lack of representation can lead to a failure in identifying disease-causing mutations in African people, since the data from people of European descent does not always apply in the same way.
Another key feature of the project is that all the partnering institutions will have exclusive access to the data, as well as institutions in future partnerships. Pharmaceutical companies tend to restrict the sharing of their data, so this freedom of access stands out as a unique and positive decision.