Biobanks in South Africa: A global perspective on privacy and confidentiality

Abstract

The Universal Declaration of Bioethics and Human Rights (UDBHR) of the United Nations Educational, Scientific and Cultural Organization (UNESCO) was adopted unanimously in 2005 by the world community as a universal guideline, according to which members of the global community were accountable to each other. Research results from UNESCO show that the UDBHR has had little or no impact in South Africa (SA). The primary objective of this article is to promote awareness of the UDBHR in SA and Africa by focusing on Article 9 of the Declaration, which accepts the right to privacy and confidentiality. For this objective to be relevant in the SA context, depends on whether the guidelines of the National Department of Health’s Ethics in Health Research: Principles, Processes and Structures of 2015 acknowledge biobanks of the universally accepted ethical guidelines on privacy and confidentiality of autonomous persons and whether these guidelines are broadly in accordance with global bioethical guidelines.