Many studies of the human genome require participants to sign a form that gives them little direct control over data will be used. But a panel of researchers in Africa say that can fuel mistrust between researchers and participants, and must change.
This austere message appeared in a report published last week, Recommendations for governance of biological data and samples in Africa, a committee of 13 African scientists, whose expertise ranges from bioinformatics to genomics.
The Nairobi-based African Academy of Sciences and the Addis Ababa-based African Union Development Agency convened the group in June 2019 in response to concerns that international research funding agencies and researchers in high-income countries have a disproportionate influence when it comes to setting research priorities and data-the sharing rules in Africa.
The report states that research participants in Africa are particularly vulnerable to exploitation. This is because illiteracy and disease are common in Africa and many people have limited access to medical care. By participating in research, people can …
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