How people in Africa understand big data in genetic medicine
Official title: Public Understanding of Big data in Genomics Medicine in Africa (PUBGEM-Africa)
Funded at University of Cape Town · NIH-11177936 · Data updated 2026-11-12
This project will learn what adults in Africa, including people with adult-onset diabetes, think and feel about using large genetic datasets for health care and research.
Quick facts
| Grant type | U01 cooperative agreement |
|---|---|
| Study type | NIH-funded research |
| Funding institution | University of Cape Town NIH-funded |
| Lab location | 1 site (Rondebosch, South Africa) |
| Project start | September 20, 2021 |
| Project end | July 31, 2026 |
| Funding year | 2025 |
| Award (this year) | $350,857 |
| NIH project number | 5U01MH127692-05 |
| Project ID | NIH-11177936 on NIH RePORTER |
Who could benefit from this research
✓Could help
Ideal participants are adults (age 21+) in African communities, including people with adult-onset diabetes, as well as other stakeholders willing to discuss their views on genetic data use.
✕Less likely to help
People seeking immediate new treatments or clinical interventions will not directly benefit from this ethics and public-engagement project.
What this research studies
You'll be invited to share your views through surveys, interviews, or group discussions about using big genetic datasets in health. The research team will also speak with doctors, researchers, data managers, funders, and research ethics committees to clarify roles and responsibilities around data sharing, privacy, returning genetic results, and commercial uses. They will review policies and real-world examples to identify where people feel prepared or concerned, with attention to implications for conditions like adult-onset diabetes. The aim is to help shape clearer communication, privacy protections, and fair practices for using genomics big data in African health settings.
Why it matters
Potential benefit: If successful, the project could improve how genomic data are shared and explained so patients feel safer contributing data and may benefit more fairly from genomics-informed care.
How similar studies have gone: There is growing ethics and public-engagement research on genomics in Africa, but focused work on big data approaches and public views in African settings is relatively new.
Where this research is happening
-
University of Cape Town
Rondebosch, South Africa Active
Researchers
- Principal investigator: Wonkam, Ambroise — University of Cape Town
- Study coordinator: Wonkam, Ambroise
About this research
- This is an active NIH-funded research project — typically early-stage science, not a clinical trial accepting patient enrollment.
- Some NIH-funded labs run parallel clinical studies or seek volunteers for related work. To check, contact the principal investigator or institution listed above.
- For full project details, budget, and progress reports, visit the official NIH RePORTER page.