Document Actions

The roles of ethics in effective global genomics research networks (MalariaGEN)

Michael Parker

Successful genomic epidemiology involves the establishment of large and diverse multinational collaborative consortia. In many cases these will require the development and maintenance of network-like partnerships involving medical researchers, statisticians, specialists in information technology, local clinicians distributed internationally, cutting edge genotyping facilities, and communities in developing countries. The dependence of science upon the building and maintenance of such consortia means that one of the key potential roadblocks to successful research is the building and maintenance of the relationships, shared values and practices underpinning collaborative science. An example of this is the need to reach agreement on particular occasions about the appropriate balance between the need for standardisation and shared practices on the one hand, and for diversity and appropriateness to local settings on the other. An example in MalariaGEN of how such an agreed balance was achieved is the decision to adopt a consortially agreed consent ‘template’ upon which appropriately diverse local practices might be based. The aim of this research project is to map the ways in which a multinational network of medical researchers, clinicians, and communities and individuals (MalariaGEN) identifies, negotiates and addresses potential roadblocks in the process of developing and maintaining the relationships, shared values and practices underpinning collaborative science and a successful international genomic epidemiology consortium. And, within the context of the above, to identify key ethical and value factors which may arise and play a role in the successful development of international medical research consortia.