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

Published online by Cambridge University Press:  29 December 2020

SAFIA MAHOMED
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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

human biobankingdeveloping and developed countriessecondary uses of materialsownershipprivacycommunity engagementinformed consentbroad consentethico-legal framework
Type
Bioethics Beyond Borders
Information
Cambridge Quarterly of Healthcare Ethics , Volume 30 , Issue 1 , January 2021 , pp. 146 - 160
Copyright
© The Author(s), 2020. Published by Cambridge University Press

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Footnotes

Acknowledgment: This work is part of my Ph.D. thesis. I would like to acknowledge my doctoral supervisors, Prof. K. G. Behrens (Steve Biko Centre for Bioethics, University of the Witwatersrand, South Africa), Prof. M. Labuschaigne (formerly Nöthling-Slabbert) (University of South Africa) and Prof. I. M. Sanne (University of the Witwatersrand, South Africa). I acknowledge the grant support I received from the NIAID to the ACTG (UM1 AI068636). I acknowledge the financial support received by UNISAs College Research and Innovation Committee and absolve UNISA from any responsibility for any opinions or conclusions contained in this publication.

References

Notes

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    1. a.

      a. Participate in research or not or withdraw at any time without penalty;

    2. b.

      b. Be respected, including the right of their autonomy, culture, beliefs, and values;

    3. c.

      c. Information about the research (it is important to ensure that information is communicated in understandable language, format, and in a conducive environment at all stages of the research);

    4. d.

      d. Protection against research related injuries, harm, exploitation, and any other forms of abuse;

    5. e.

      e. Privacy and confidentiality of their participation, during and after the research;

    6. f.

      f. The standard of healthcare that is established nationally;

    7. g.

      g. Treatment and management of research-related injuries; and

    8. h.

      h. Reimbursement for costs associated with their participation in the research.” at 2.

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    1. (a)

      (a) researchers propose to collect genetic material and information from individuals who are chosen because of their membership of a particular community;

    2. (b)

      (b) the research involves sensitivities for that community; and

    3. (c)

      (c) there is known to be a culturally relevant community structure involved in such matters.”

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