Major Collaboration Aims to Tackle Racial Gaps in Genetic Research
On October 19, 2023, four leading pharmaceutical companies—Regeneron, AstraZeneca, Novo Nordisk, and Roche—in partnership with Meharry Medical College, announced the launch of a groundbreaking health equity initiative: the “Together for CHANGE” biobank. The project will collect and analyze genetic data from 500,000 individuals of African ancestry, making it one of the largest efforts of its kind in the world.
This initiative is designed to correct a long-standing imbalance in genomics research, where people of African descent are vastly underrepresented, leading to significant gaps in our understanding of disease risk, treatment response, and health outcomes for millions.
Why Representation in Genetic Research Matters
Currently, more than 80% of genetic data used in medical studies comes from individuals of European ancestry. This imbalance limits the effectiveness of precision medicine, contributes to misdiagnoses, and reduces the likelihood of developing targeted therapies for populations that bear a disproportionate burden of chronic and rare diseases.
African Americans, for example, face higher rates of hypertension, diabetes, stroke, and certain cancers, but these disparities are rarely reflected in research datasets. By expanding African ancestry representation, “Together for CHANGE” seeks to:
- Improve drug discovery and development for diseases disproportionately affecting Black communities.
- Enhance diagnostic accuracy by uncovering ancestry-specific genetic markers.
- Foster health equity by enabling more inclusive clinical trials and treatment options.
About the Biobank: Scope and Impact
The biobank, to be housed at Meharry Medical College, a historically Black academic health sciences center based in Nashville, will serve as a repository of genetic, clinical, and social health data. The project plans to engage with Black communities across the U.S. through:
- Voluntary genetic sample collection from 500,000 individuals.
- Integration of electronic health records, lifestyle surveys, and environmental data.
- Community-based partnerships to ensure ethical practices, transparency, and informed consent.
Participants will be recruited through trusted networks, including faith-based organizations, local clinics, and health advocates, with a strong emphasis on cultural competence and privacy protection.
Industry and Academic Collaboration
This project represents a rare convergence of biopharma leadership and academic public health expertise:
- Regeneron, a leader in genetics-based drug development, brings technical infrastructure and data science capabilities.
- AstraZeneca, Novo Nordisk, and Roche contribute funding, research support, and access to therapeutic pipelines.
- Meharry Medical College will oversee participant recruitment, data stewardship, and community engagement, reinforcing the project’s grounding in Black health leadership.
Together, these stakeholders aim to democratize access to genomic innovation, while setting new standards for inclusive research.
Addressing Trust and Ethical Considerations
Given the history of medical exploitation and racial bias in research—from the Tuskegee syphilis study to ongoing disparities in clinical trials—organizers of the “Together for CHANGE” initiative are prioritizing transparency, data governance, and community trust.
Key safeguards include:
- Community advisory boards to guide research priorities and oversight.
- Participant access to their own data and findings.
- Rigorous data protection protocols aligned with federal privacy standards.
The initiative seeks not only to generate new insights but also to repair historic breaches of trust and demonstrate how ethical, community-centered research can shape the future of health equity.
A Milestone for Genomic Equity
With its large-scale ambition, diverse stakeholder involvement, and intentional focus on underserved populations, “Together for CHANGE” represents a milestone in genomic equity and a model for future biobanking efforts worldwide.
If successful, it could lead to:
- More effective, personalized treatments for diseases affecting African-descended populations.
- Improved algorithms in health tech that reduce bias in diagnostics and risk assessments.
- Broader societal benefits as findings from the biobank inform public health policy and clinical guidelines.
As the program gains momentum, it will be closely watched by researchers, advocates, and policymakers looking to build a more inclusive and just biomedical research ecosystem.
Source:
Axios – “Together for CHANGE” Biobank Launched to Address Health Disparities
