The Governance of Genomic Information: Will It Come of Age?

The completion of the Human Genome Project has opened up unprecedented possibilities in healthcare, but also ethical and social dilemmas in terms of how these can be achieved. Genomic information can be seen as a 'global public good' (GPG), in that it is represented by knowledge in the public domain and across national boundaries. Lack of investment, infrastructure and expertise in developing countries means that they are unable to take advantage of these GPG characteristics to address their health needs, fuelling fears of a growing 'genomics divide'. Some have suggested an international knowledge sharing and capacity building network, a Global Genomics Initiative, as a means to harness the potential of genomics to reduce inequalities in health between North and South. Three UNESCO declarations also call for cooperation between developed and developing countries in genomics research and science and technology in general. Using international relations theories around global governance and networks as a conceptual framework, this paper examines whether these initiatives are likely to succeed in providing effective governance of genomics

Ethical considerations in prehospital ambulance based research : qualitative interview study of expert informants

Abstract: Background: Prehospital ambulance based research has unique ethical considerations due to urgency, time limitations and the locations involved. We sought to explore these issues through interviews with experts in this research field. Methods: We undertook semi-structured interviews with expert informants, primarily based in the UK, seeking their views and experiences of ethics in ambulance based clinical research. Participants were questioned regarding their experiences of ambulance based research, their opinions on current regulations and guidelines, and views about their general ethical considerations. Participants were chosen because they were actively involved in, or in their expert capacity (e.g. law) expressed an interest in, ambulance based research. Results: Fourteen participants were interviewed including principal investigators, researchers, ethicists and medical lawyers. Five major themes were identified: Capacity, Consent, Clinical Considerations, Consultation and Regulation. Questions regarding consent and capacity were foremost in the discussions as all participants highlighted these as areas for concern. The challenges and use of multiple consent models reflected the complexity of research in this environment. The clinical theme referred to the role of paramedics in research and how research involving ambulance services is increasingly informing improvements to patient care and outcomes and reducing the burden on hospital services. Most felt that, although current regulations were fit for purpose, more specific guidance on implementing these in the ambulance setting would be beneficial. This related closely to the theme of consultation, which examined the key role of ethics committees and other regulatory bodies, as well as public engagement. Conclusions: By interviewing experts in research or ethics in this setting we were able to identify key concerns and highlight areas for future development such as improved guidance

Networked Governance: Bridging the 'Genomics Divide'?

The completion of the Human Genome Project has opened up unprecedented possibilities in healthcare, but also ethical and social dilemmas. Some fear that the health concerns of developed countries will take precedence over those of developing countries, thereby creating a 'genomics divide'. Partly to address such issues, UNESCO has adopted three international declarations on human genomics and bioethics, whilst the Toronto Joint Centre for Bioethics (TJCB) has proposed the formation of a Global Genomics Initiative (GGI). Both UNESCO and TJCB require the support of governments to implement their programs. In her book 'A New World Order', Anne-Marie Slaughter proposes a global governance framework centered on government networks and the disaggregated state. This paper explores whether her framework might be applied to the UNESCO declarations and the GGI. Drawing on empirical data from fieldwork conducted in Kenya and South Africa in 2005 and 2006, the paper concludes that government networks could strengthen these genomics governance mechanisms, but that integration rather than disaggregation at national level would be essential to the success of any such endeavour