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Open Access 01-03-2008 | Original Article

The UNESCO Universal Declaration on Bioethics and Human Rights: Perspectives from Kenya and South Africa

Author: Adèle Langlois

Published in: Health Care Analysis | Issue 1/2008

Abstract

In October 2005, UNESCO (the United Nations Educational, Scientific and Cultural Organization) adopted the Universal Declaration on Bioethics and Human Rights. This was the culmination of nearly 2 years of deliberations and negotiations. As a non-binding instrument, the declaration must be incorporated by UNESCO’s member states into their national laws, regulations or policies in order to take effect. Based on documentary evidence and data from interviews, this paper compares the declaration’s universal principles with national bioethics guidelines and practice in Kenya and South Africa. It concentrates on areas of particular relevance to developing countries, such as protection of vulnerable persons and social responsibility. The comparison demonstrates the need for universal principles to be contextualised before they can be applied in a meaningful sense at national level. The paper also assesses the ‘added value’ of the declaration in terms of biomedical research ethics, given that there are already well-established international instruments on bioethics, namely the World Medical Association Declaration of Helsinki and the CIOMS (Council for International Organizations of Medical Sciences) guidelines on biomedical research. It may be that the added value lies as much in the follow-up capacity building activities being initiated by UNESCO as in the document itself.

The declaration was adopted in 2005, but the copyright is 2006 in the published version, thus the citation is given as 2006 throughout the text of this paper.

Thirty interviews took place in Kenya, 34 in South Africa, 3 in the United Kingdom and 3 in France. The 6 non-Africa-based interviews were with people involved in the negotiation of the UNESCO declaration.

The term ‘ethicist’ denotes both members of ethics committees and academic ethicists. While not all those interviewed who sat on ethics committees had been trained in bioethics as a philosophical discipline, all those interviewed who had received such training sat on at least one ethics committee.

Note that these categorisations are somewhat arbitrary, there being some overlap between sectors. One Kenyan scientist interviewed also acts as an advisor to both the national government and UNESCO, for example.

Doctoral study began in October 2004, during the drafting period of the UNESCO bioethics declaration.

The Universal Declaration on the Human Genome and Human Rights (1997) and the International Declaration on Human Genetic Data (2003).

The guidelines are dated 2004, but the copyright is 2005 in the published version, thus the citation is given as 2005 throughout the text of this paper.

Note that the Guidelines for Ethical Conduct of Biomedical Research Involving Human Subjects in Kenya (2004) reference the 1993 version of the CIOMS guidelines rather than the more recent 2002 version.

“Collectivities are groups distinguished by: common beliefs, values, social structures and other features that identify them as a separate group; customary collective decision-making according to tradition and beliefs; the custom of leaders expressing a collective view; members of the collectivity being aware of common activities and common interests.” [13, p. 28]

Chapter 8 was yet to be operationalised when fieldwork was conducted.

IRENSA is the International Research Ethics Network for Southern Africa, based at the University of Cape Town. SARETI is the South African Research Ethics Training Initiative and is run by a collaborative partnership between the University of KwaZulu-Natal, the University of Pretoria and Johns Hopkins University.

Note that until the final draft of the declaration the article on risk assessment and management was more detailed. This was changed for “just a generality” because delegates were unable to agree on anything more substantial (interview with participant F_01:2005; [18]).

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Title: The UNESCO Universal Declaration on Bioethics and Human Rights: Perspectives from Kenya and South Africa
Author: Adèle Langlois
Publication date: 01-03-2008
Publisher: Springer US
Published in: Health Care Analysis / Issue 1/2008
Print ISSN: 1065-3058
Electronic ISSN: 1573-3394
DOI: https://doi.org/10.1007/s10728-007-0055-7

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The UNESCO Universal Declaration on Bioethics and Human Rights: Perspectives from Kenya and South Africa

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