Human Biobanking in Developed and Developing Countries: An Ethico-Legal Comparative Analysis of the Frameworks in the United Kingdom, Australia, Uganda, and South Africa

Camb Q Healthc Ethics. 2021 Jan;30(1):146-160. doi: 10.1017/S0963180120000614.

Abstract

Although the concept of biobanking is not new, the open and evolving nature of biobanks has created profound ethical, legal, and social implications, including issues around informed consent, community engagement, secondary uses of materials over time, ownership of materials, data sharing, and privacy. Complexities also emerge because of increasing international collaborations and differing national positions. In addition, the degrees and topics of concern vary as legislative, ethical, and social frameworks differ across developed and developing countries. Implementing national laws in an internationally consistent manner is also problematic. However, these concerns should not cause countries, especially developing countries, to lag behind as this novel wave of research gains momentum, particularly while several biobank initiatives are already underway in the developing world. As the law has always struggled to keep up with the fast-evolving scientific arena, this article seeks to identify the ethico-legal frameworks in place in the United Kingdom, Australia, Uganda, and South Africa, for human biobank research, in an attempt to compare and contextualize the approaches to human biobanking in specific developed and developing countries.

Keywords: broad consent; community engagement; developing and developed countries; ethico-legal framework; human biobanking; informed consent; ownership; privacy; secondary uses of materials.

MeSH terms

  • Biological Specimen Banks*
  • Developing Countries*
  • Humans
  • Informed Consent
  • South Africa
  • Uganda