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

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 priva...

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Bibliographic Details
Published in:Cambridge quarterly of healthcare ethics 2021-01, Vol.30 (1), p.146-160
Main Author: MAHOMED, SAFIA
Format: Article
Language:English
Subjects:
Biobanks
Bioethics
Bioethics Beyond Borders
Comparative analysis
Comparative studies
Councils
Developing countries
Ethics
Funding
Genetic research
Health services
Humans
Informed consent
International collaboration
LDCs
Medical research
Ownership
Population
Privacy
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Summary: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.
ISSN:0963-1801
1469-2147
DOI:10.1017/S0963180120000614