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Scientists Discuss Recommendations for Returning Individual genetic research results in African genomic research
Scientists Discuss Recommendations for Returning Individual genetic research results in African genomic research

There is an ongoing discussion among the scientific community, policymakers, and research participants about how to return a finding concerning an individual research participant’s health that was discovered in the course of conducting genetic research. 
In most African countries, where resources are limited, the option to return individual research results (IRRs) to research participants is not always feasible. Furthermore, African populations are more genetically diverse than other populations, and this diversity remains to be fully understood, which poses limitations on the identification of disease-related DNA changes that are more likely to be found in populations of African descent. 

In a commentary published in Nature Genetics (link is external), Human Heredity and Health in Africa (H3Africa (link is external)) researchers discuss strategies and challenges that should be addressed to develop policies and practices for returning IRRs in Africa. The researchers propose that there is a need to develop a priority list of genes and mutations that are clinically relevant in African populations. For example, known mutations that cause Sickle Cell Disease, an inheritable disorder where red blood cells to have a distorted shape like a sickle or banana, should be considered a reportable finding in countries where the frequency of the disease is high, and genetic testing is not routinely performed. In some instances, providing an individual with this level of information could inform important personal decisions around marriage and reproduction. The team also proposed several ways to overcome challenges  around returning IRRs in Africa, such as increasing the number of healthcare workers with experience in medical genetics. The H3Africa Consortium, supported by the NIH Common Fund, is taking steps to help resolve this issue by offering basic genetic counseling training to nurses across the continent. This commentary adds to the conversation around guidelines for returning IRRs from genomics research and approaches to improve healthcare in Africa.  
 

Reference:

Returning incidental findings in African genomics research (link is external). Wonkam A, de Vries J. Nat Genet. 2019 Nov 25. doi: 10.1038/s41588-019-0542-4

This page last reviewed on January 24, 2024