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Researcher Name: Adèle Langlois Project Start Date: 01.10.2004 Project End Date: 12.05.2008 Contact Details: Since graduating from her PhD in 2008, Adèle worked at the University of Cambridge and is now a lecturer in Politics and International Relations at the University of Lincoln. Adèle's email address is alanglois@lincoln.ac.uk. Funder: The Wellcome Trust Biomedical Ethics Programme Background: 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. The thesis examined one of the several international responses these dilemmas have spawned: the suite of declarations on genetics and bioethics adopted between 1997 and 2005 by UNESCO. Through this initiative, UNESCO hopes to promote the ethical governance of genetic and biomedical research, which is often conducted on an international basis. The thesis assessed the actual and potential efficacy of the declarations as a governance mechanism, in terms of protecting individual research participants and reducing inequalities of health between North and South. It analysed the negotiation and subsequent implementation of the declarations at international and national levels. Aims and Objectives: The aim was to address the following research question: What insights can international relations theory offer into the actual and potential efficacy of global governance mechanisms in genetics and bioethics, particularly with regard to developing countries? This would provide data on (a) the efficacy of the UNESCO declarations and (b) whether the field of international relations can offer useful explanatory and normative theories on this. Research Methods: The fieldwork consisted of 70 semi-structured interviews with a range of persons considered to be stakeholders in genetics and bioethics in France, the United Kingdom, Kenya and South Africa. The sample was chosen to reflect different societal perspectives on genetics and bioethics and thus consisted of: those who formulate policy at international and national levels, those who must implement these policies in laboratories and ethics committees, those who claim to represent public concerns and those with commercial interests. The breakdown of sectors was as follows: policy-makers (20) scientists (17) ethicists (18) civil society representatives (12) businesspersons (3) The interview data were triangulated with observations at negotiations held at UNESCO headquarters for the 2005 UNESCO Universal Declaration on Bioethics and Human Rights and with documentary analysis (official reports, NGO newsletters, brochures from government departments, national laws, websites). Key Findings: The UNESCO declarations are in several respects classic exemplars of a formal international regime. Their negotiation demonstrated unequal power between both developed and developing countries and state and non-state actors. Opinions were diverse as to which issues should be addressed and in what manner, such that agreement was only possible at a general level, on mostly uncontroversial aspects of genetics and bioethics. The subsequent implementation of the declarations has been slow and rather piecemeal, as might be expected of non-binding norms. Furthermore, UNESCO’s mandate overlaps somewhat with those of other institutions. As the organisation is seen by some as a relative newcomer to bioethics, this could have a detrimental effect on its perceived legitimacy. The idea of a multisectoral global network for genomics governance, as proposed by the Toronto Joint Centre for Bioethics in 2006, proved popular among participants. If such a network could be built around the UNESCO declarations, this might facilitate their implementation. Combining the formal structure of UNESCO with that of a more informal network in this way would encourage high quality discussion within a framework of procedural fairness. The inclusion of those non-state actors who might put the declarations’ norms into practice, such as geneticists, ethicists and representatives from civil society and industry, would be crucial to the legitimacy of such an endeavour. The network could help to address issues in genetics and bioethics such as intellectual property rights, community engagement, social responsibility, benefit sharing and capacity building. Wider implications for policy: The UNESCO declarations’ legitimacy and implementation issues are typical of the international system as observed by international relations scholars. They invite the question, how might this situation be improved? Any answer would have to address several points: what power and influence state and non-state actors should have, both expert and lay; how everyone can be included who should be; what the optimum balance is between formality and informality; how duplication can be avoided but complementarity strengthened; how norms can be upheld, particularly should state sovereignty be maintained; and the extent to which those norms should be universal. The proposed solutions examined in the thesis—reformed regimes, issue- and government-based global networks and cosmopolitan democracy—differ in the nature and adequacy of their approaches to these issues. It is important to recognise, however, that any new forms of global governance would not replace older ones but would have to be integrated with them, as the structures and norms of the latter will not disappear. Thus UNESCO and other IGOs will surely have a major role to play in the global governance of the future. Project Update: Publications: Journal Articles Langlois, Adèle (2008) 'The UNESCO Universal Declaration on Bioethics and Human Rights: Perspectives from Kenya and South Africa', Health Care Analysis Vol 16 (1) p39-51 Langlois, Adèle (2006) 'The Governance of Genomic Information: Will It Come of Age?' Genomics, Society and Policy Vol 2 (3) p49-63 Book Chapter Adèle Langlois, “Crossing Places in Bioethics Regulation: Kenya and Beyond,” in Crossing Places: New Research in African Studies, edited by Charlotte Baker and Zoë Norridge (Newcastle: Cambridge Scholars Publishing, 2007): 114-127. External Links: Further information:
Since graduating from her PhD in 2008, Adèle worked at the University of Cambridge and is now a lecturer in Politics and International Relations at the University of Lincoln. Adèle's email address is alanglois@lincoln.ac.uk.
The Wellcome Trust Biomedical Ethics Programme
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.
The thesis examined one of the several international responses these dilemmas have spawned: the suite of declarations on genetics and bioethics adopted between 1997 and 2005 by UNESCO.
Through this initiative, UNESCO hopes to promote the ethical governance of genetic and biomedical research, which is often conducted on an international basis.
The thesis assessed the actual and potential efficacy of the declarations as a governance mechanism, in terms of protecting individual research participants and reducing inequalities of health between North and South. It analysed the negotiation and subsequent implementation of the declarations at international and national levels.
The aim was to address the following research question: What insights can international relations theory offer into the actual and potential efficacy of global governance mechanisms in genetics and bioethics, particularly with regard to developing countries?
This would provide data on (a) the efficacy of the UNESCO declarations and (b) whether the field of international relations can offer useful explanatory and normative theories on this.
The fieldwork consisted of 70 semi-structured interviews with a range of persons considered to be stakeholders in genetics and bioethics in France, the United Kingdom, Kenya and South Africa.
The sample was chosen to reflect different societal perspectives on genetics and bioethics and thus consisted of:
The breakdown of sectors was as follows:
The interview data were triangulated with observations at negotiations held at UNESCO headquarters for the 2005 UNESCO Universal Declaration on Bioethics and Human Rights and with documentary analysis (official reports, NGO newsletters, brochures from government departments, national laws, websites).
The UNESCO declarations are in several respects classic exemplars of a formal international regime. Their negotiation demonstrated unequal power between both developed and developing countries and state and non-state actors.
Opinions were diverse as to which issues should be addressed and in what manner, such that agreement was only possible at a general level, on mostly uncontroversial aspects of genetics and bioethics. The subsequent implementation of the declarations has been slow and rather piecemeal, as might be expected of non-binding norms.
Furthermore, UNESCO’s mandate overlaps somewhat with those of other institutions. As the organisation is seen by some as a relative newcomer to bioethics, this could have a detrimental effect on its perceived legitimacy. The idea of a multisectoral global network for genomics governance, as proposed by the Toronto Joint Centre for Bioethics in 2006, proved popular among participants.
If such a network could be built around the UNESCO declarations, this might facilitate their implementation. Combining the formal structure of UNESCO with that of a more informal network in this way would encourage high quality discussion within a framework of procedural fairness.
The inclusion of those non-state actors who might put the declarations’ norms into practice, such as geneticists, ethicists and representatives from civil society and industry, would be crucial to the legitimacy of such an endeavour.
The network could help to address issues in genetics and bioethics such as intellectual property rights, community engagement, social responsibility, benefit sharing and capacity building.
The UNESCO declarations’ legitimacy and implementation issues are typical of the international system as observed by international relations scholars. They invite the question, how might this situation be improved? Any answer would have to address several points:
what power and influence state and non-state actors should have, both expert and lay;
The proposed solutions examined in the thesis—reformed regimes, issue- and government-based global networks and cosmopolitan democracy—differ in the nature and adequacy of their approaches to these issues.
It is important to recognise, however, that any new forms of global governance would not replace older ones but would have to be integrated with them, as the structures and norms of the latter will not disappear. Thus UNESCO and other IGOs will surely have a major role to play in the global governance of the future.
Journal Articles
Langlois, Adèle (2008) 'The UNESCO Universal Declaration on Bioethics and Human Rights: Perspectives from Kenya and South Africa', Health Care Analysis Vol 16 (1) p39-51
Langlois, Adèle (2006) 'The Governance of Genomic Information: Will It Come of Age?' Genomics, Society and Policy Vol 2 (3) p49-63
Book Chapter
Adèle Langlois, “Crossing Places in Bioethics Regulation: Kenya and Beyond,” in Crossing Places: New Research in African Studies, edited by Charlotte Baker and Zoë Norridge (Newcastle: Cambridge Scholars Publishing, 2007): 114-127.
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