ASSAf consensus study on the ethical, legal and social implications of genetics and genomics in South Africa

Abstract

South Africa is home to one of the most genetically diverse populations in the world, which, combined with its high disease burden and high-quality infrastructure, makes our country a prime location for conducting genetics and genomics research. South African genomes are therefore highly sought after by the global research community. Increasingly, a range of technological advances, including the possibility of ‘reading’ whole genomes or exomes through next-generation sequencing, allows access to detailed molecular information from which information about health and disease can be inferred. This reading may also occur when information is collected for different purposes, which raises questions about the ethics of inferring information about health and disease in these situations. Against this backdrop of technological and ethical complexity, there is an urgent need to understand and protect the interests of patients and individuals who participate in research in the fields of genetics and genomics.