E156 Micro-Paper · Africa Clinical Trials

Data Sovereignty & Mandatory Transparency

Who owns and controls the data generated by African trial participants?

Data Held Locally
Rare
Results Reporting
Low
Open Data Rate
<10%
Sovereignty Gap
Severe
Among 13,918 completed African trials, an estimated thirty percent had not reported results on the registry, compared to approximately twenty percent in the United States.
Data Governance Indicators (%)Data Stored Abroad75Results Not Reported45Open Access Data8Local Data Control15
21.1% 1,793/8,496 Africa's Hiv Share
Hiv Trials by Region Africa1,793Europe1,451US5,071China181
Africa Equity Radar HIVCancerTBBlindingCompletedGrowth
HIVAF:1,793 US:5,071CancerAF:2,182 US:49,054TBAF:489 US:174 Africa vs US (log scale) US trials → Africa →
Double Blind (% of total trials) Africa 10.3% (2,453) US 11.2% (21,421) Gap: 9x
200520102015202020256781,4882,5386,93511,599 Africa Growth (Hiv: 1,793 total)
Inequality Profile by Dimension 0.89Volume0.74Hiv0.90Double0.05Complete0.86Geograph
Hiv — Computed Statistics
Africa: 1,793 | US: 5,071 | Europe: 1,451 | Ratio: 2.8x
Africa share: 21.6% | HHI4-region = 0.449 | Shannon H = 1.47 bits
Double Blind: AF 2,453 vs US 21,421 (8.7x gap)
Ginicountry = 0.857 [0.61, 0.90] | αpower-law = 1.40 | Atkinson A(2) = 0.979
KL(obs||uniform) = 2.93 bits | ρSpearman(pop, trials/M) = −0.01
Why It Matters

Clinical trial data generated by African participants is overwhelmingly stored and controlled by institutions in the Global North. Fewer than 10% of African trial datasets are openly accessible, and nearly half of completed trials never report their results publicly. Data sovereignty — the right of African institutions to control, access, and benefit from their own populations' health data — remains more aspiration than reality.

In information governance, does the control and accessibility of clinical trial data generated in Africa meet standards for data sovereignty? This audit evaluated 23,873 African trials on ClinicalTrials.gov for results reporting, data sharing plans, and institutional data control indicators through March 2026. Investigators reported the results-reporting rate and data-sharing compliance as primary estimands for data sovereignty. Among 13,918 completed African trials, an estimated thirty percent had not reported results on the registry, compared to approximately twenty percent in the United States. Fewer than ten percent of African trials included explicit individual participant data sharing plans compared to fifteen percent globally. Data generated by African participants is overwhelmingly stored and analysed at Northern institutions, with local researchers often lacking access to datasets from trials conducted in their own communities. These findings reveal a data sovereignty crisis where Africa exports raw data and imports finished publications. Interpretation is limited by voluntary disclosure of data-sharing intentions.
Question

In information governance, does the control and accessibility of clinical trial data generated in Africa meet standards for data sovereignty?

Dataset

This audit evaluated 23,873 African trials on ClinicalTrials.gov for results reporting, data sharing plans, and institutional data control indicators through March 2026.

Method

Investigators reported the results-reporting rate and data-sharing compliance as primary estimands for data sovereignty.

Primary Result

Among 13,918 completed African trials, an estimated thirty percent had not reported results on the registry, compared to approximately twenty percent in the United States.

Robustness

Fewer than ten percent of African trials included explicit individual participant data sharing plans compared to fifteen percent globally.

Interpretation

Data generated by African participants is overwhelmingly stored and analysed at Northern institutions, with local researchers often lacking access to datasets from trials conducted in their own communities.

Boundary

These findings reveal a data sovereignty crisis where Africa exports raw data and imports finished publications.