The UNESCO Genetics and Bioethics Declarations: Implications for Global Governance

Langlois, Adèle Fiona (2008). The UNESCO Genetics and Bioethics Declarations: Implications for Global Governance. PhD thesis The Open University.

DOI: https://doi.org/10.21954/ou.ro.0000ea76

Abstract

The sequencing of the entire human genome has opened up unprecedented possibilities for healthcare, but also ethical and social dilemmas about how these can be achieved, particularly in developing countries. This thesis examines two of the several international responses these dilemmas have spawned: the suite of declarations on genetics and bioethics adopted between 1997 and 2005 by the United Nations Educational, Scientific and Cultural Organization (UNESCO) and the Global Genomics Initiative proposed by the Toronto Joint Centre for Bioethics (TJCB). Through these initiatives, UNESCO and TJCB hope to promote the ethical governance of genetic and biomedical research, which is often conducted on an international basis. The thesis draws on interview, documentary and observational data, collected in Kenya and South Africa and from UNESCO, to assess the actual and potential efficacy of these two governance mechanisms, in terms of protecting individual research participants and reducing inequalities of health between North and South. It analyses the negotiation and subsequent implementation of the UNESCO declarations at international and national levels and the plans to date for the Global Genomics Initiative. Using as a conceptual framework particular branches of international relations theory concerned with global governance-namely regime theory, networked governance and cosmopolitan democracy-the thesis finds that determining where the balance of power between different actors should lie and, moreover, how this balance can be achieved is complex and difficult in international decision-making fora. Furthermore, the effective implementation of any regulations, policies or programmes there decided upon requires co-ordination among different sectors and organisations, across international and national levels. The thesis concludes that the UNESCO declarations on genetics and bioethics might provide a means to effect such a system of governance, if supported by networks of stakeholders both within and between states, perhaps through the proposed GGI.

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