Sharing health data responsibly: A model for ethical collaboration
- Wits University
One of the biggest challenges that DS-I Africa scientists face is understanding how to manage and integrate data within their research projects.
“This ended up being far more complex than anybody anticipated,” says Michèle Ramsay, PhD. “The data comes from people who have generously given their samples and data, so managing that responsibly is interesting yet difficult." Ramsay, who is a professor in the Division of Human Genetics and the Sydney Brenner Institute for Molecular Bioscience (SBIMB) at the University of the Witwatersrand (Wits) in Johannesburg, adds that what is challenging is "the negotiation with research groups about the data, making sure that ethics committees have approved the studies in line with the participant informed consent and that it's legal, and then combining data sets from different countries.”
Ramsay, along with Scott Hazelhurst, PhD, professor of bioinformatics at Wits, is a co-principal investigator for DS-I Africa’s Multimorbidity in Africa: Digital Innovation, Visualisation, and Application (MADIVA) research hub. MADIVA studies multiple chronic diseases in African populations using long-term health, demographic, and genomic data from the Africa Wits-INDEPTH Partnership for Genomic Studies for two communities, Bushbuckridge (Agincourt), South Africa and Nairobi, Kenya. MADIVA also uses data from the Health and Demographic Surveillance Site (HDDS) dataset as well as additional nested research studies.
A legal perspective
To help think through complex data issues and come up with guidelines for MADIVA, Hazelhurst turned to a PhD law student, Daphine Tinashe Nyachowe. The resulting published paper (and part of Nyachowe’s PhD thesis), Balancing protection of participants and other stakeholders with openness: African lessons from the MADIVA data sharing and access policy, is “about understanding how to share data from a legal perspective and an ethical perspective,” explains Ramsay.
This article was originally written by Susan Scutti and published in Global Health Matters in January/February 2026 for the Fogarty International Center at the National Institutes of Health. Read the full article here.