Abstract:
As the focus on the origin of modern man appears to be
moving from eastern to southern Africa, it is recognised that indigenous
populations in southern Africa may be the most genetically diverse on
the planet and hence a valuable resource for human genetic diversity
studies. In order to build regional capacity for the generation, analysis
and application of genomic data, the Southern African Human
Genome Programme was recently launched with the aid of seed
funding from the national Department of Science and Technology
in South Africa. The purpose of the article is to investigate pertinent
ethical, legal and social issues that have emerged during the planning
stages of the Southern African Human Genome Programme. A careful
consideration of key issues such as public perception of genomic
research, issues relating to genetic and genomic discrimination and
stigmatisation, informed consent, privacy and data protection, and
the concept of genomic sovereignty, is of paramount importance in
the early stages of the Programme. This article will also consider the
present legal framework governing genomic research in South Africa
and will conclude with proposals regarding such a framework for the
future.