Despite the vast diversity of its populations, genetic studies in Africa have been limited. African populations, Malians in particular, have a high rate of intra-ethnic and consanguineous marriage, resulting in increased prevalence of autosomal recessive diseases. Family-based genetic studies can be limited in developed countries due to small sib ships. The average fertility rate in Mali is over 6 births per woman, offering a unique opportunity to find new disease genes or mutations that can then be studied in other populations.
Sub Saharan Africa with only 11% of the world's population has more than 24% of the global disease burden, over 70% of the world's HIV infected persons, and only 3% of the global work force, and spends less than 1% of the world financial resources on health. In the case of Uganda, a country of 35 million people who suffer with a heavy disease burden, there are only 7 Ugandan specialists trained at masters level in bioethics.
The overall goal of this proposed project is to systematically develop culturally appropriate model ethics guidelines for conducting genetics and genomics research (GGR) in Uganda.