Benefit‐sharing with human participants in health research in South Africa: A call for clarity

This study critically examines the concept of benefit‐sharing in the context of health research involving human participants in South Africa, identifying a significant gap in the precision and application of terminology. It introduces a new terminological framework designed to provide clarity and fa...

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Bibliographic Details
Published in:Developing world bioethics Vol. 25; no. 2; pp. 144 - 153
Main Authors: Kamau, Claude, Prinsen, Larisse, Thaldar, Donrich
Format: Journal Article
Language:English
Published: England Wiley Subscription Services, Inc 01.06.2025
John Wiley and Sons Inc
Subjects:
Biomedical Research - ethics
Biomedical Research - legislation & jurisprudence
Committees
Decision making
Decision Making - ethics
Discourse
Ethics
Ethics committees
Ethics Committees, Research
Ethics, Research
Guidelines
Health research
Humans
Informed Consent - ethics
Medical research
Original
Research ethics
Research Subjects
Sharing
South Africa
Statutes
Terminology
Terminology as Topic
South Africa
reward
benefit‐sharing
South Africa
compensation
reimbursement
non‐compensatory reward
ISSN:1471-8731, 1471-8847, 1471-8847
Online Access:Get full text
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Summary:This study critically examines the concept of benefit‐sharing in the context of health research involving human participants in South Africa, identifying a significant gap in the precision and application of terminology. It introduces a new terminological framework designed to provide clarity and facilitate standardisation in both national and international discourse on benefit‐sharing. The analysis extends to the complex legal landscape in South Africa, highlighting the nuances of mandated, permitted, and prohibited practices of benefit‐sharing across various statutes. This reveals substantial implications for ethics committees, researchers, and participants, emphasising the need for a legal and ethical recalibration. Furthermore, the manuscript critiques South Africa's main ethics instruments for their inadequate guidance on benefit‐sharing and proposes recommendations for enhancing the Department of Health's ethics guidelines. By advocating for a coherent, legally informed approach to ethical decision‐making, the study underscores the need for integrating the proposed framework and legal insights into ethics guidelines. This comprehensive strategy aims not only to advance ethical practices within South Africa but also to contribute significantly to the global discourse on benefit‐sharing in health research.
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ISSN:1471-8731
1471-8847
1471-8847
DOI:10.1111/dewb.12456