Genomic Databases and International Collaboration

Recent years have witnessed a key development within biomedicine—namely, the move from genetic to genomic research. Genomic research, which operates at the level of the whole genome rather than individual genes, requires a powerful new set of research tools, resources and supporting technologies. Having moved from DNA sequence mapping to the use of haplotypes, the next advances in our understanding of disease risk and health may well be achieved through the study of “normal” genomic variation across whole populations. Such studies require not only samples and data, but also highly sophisticated, substantial database infrastructures to support them. Longitudinal and largely epidemiological in nature, these population-scale genomic database resources are designed to serve a multiplicity of specific research projects at both national and international levels. Current ethical guidance in the area of genetic research promotes the need for international collaboration. Yet, is international genomic research collaboration possible considering both the scientific and structural differences between national approaches to governing genomic databases and associated population biobanks? A review of existing norms at the international level—in particular, around benefit sharing and access to data—and their application in different countries, reveals areas of both convergence and divergence. But, most of all, it reveals the need for international harmonisation in order to secure interoperability and the public participation, trust and investment in such large initiatives that are crucial to their success.