Human Genetics and Genomics in South Africa: Ethical, Legal and Social Implications

Abstract

This study aims to address the ethical, legal and social implications (ELSI) of genetics and genomics work, as it relates to research, health service provision and forensic applications (medical and legal) in South Africa. The study was undertaken by a 13-member panel appointed by the Academy of Science of South Africa (ASSAf).

The deliberations in this report are centred on the broad philosophical approach of Ubuntu, a philosophical notion that refers to the essence or quality of being human. The report describes the benefits to be derived from genetic and genomics work, the need for boundaries to be clearly defined and adherence monitored to ensure that benefits are shared by all and that no harm is done. The report is divided into three thematic areas: Building Relationships, Respect for Persons and Good Stewardship. Each section is followed by recommendations which are ethically and legally sound, culturally appropriate, feasible, enforceable and sustainable, given the resources within the country, and balanced against competing national priorities.