Ethics review boards in South Africa and the need for patient advocacy

Abstract

Executive summary
The development of new therapies is a major undertaking with the potential for huge profits. Consequently a large industry associated with running of clinical trials has arisen. Many clinical trials are undertaken in the developing world. This creates some unique ethical dilemmas which ethicists in the developing countries need to take cognizance of. Some of the regulations around research in developing countries are less stringent than in first world countries and infrastructure to police such work is often lacking. Developing world patients are often less informed about their rights and are less likely to have access to legal support in the event that they feel aggrieved. In many ways the situation in the world of knowledge reflects the situation as seen in that of trade, with the developing world being rich in natural resources but poor in infrastructure. Managing research in the developing world is a delicate balancing act in which the rights of vulnerable communities need to be protected whilst facilitating valuable research that may provide meaningful knowledge and therapies that may help alleviate human suffering. In South Africa ethics review boards need to be advocates of patient rights not mere overseers of research.