18 - Pursuing equality: questions of social justice and population genomics

Summary

The claim that human genomic databases should be seen as a global public good has been used to support the development of such projects. In a previous article we have suggested that the description of databases as global public goods fulfils a strategic purpose, grounded in claims to justice and equity and supporting calls for a more equitable distribution of the benefits of genomic technologies. We identified some of the complexities associated with using the ‘public good’ concept in this context, and noted that tensions may arise as the benefits of databases may lie precisely in their local, geographical relevance. These tensions and complexities increase both when taking into account the development of international collaborations such as P3G, and in paying greater attention to the complex interplay of social, political and scientific perspectives as they relate to genes, ethnicity and race. Furthermore, because the language of benefits and burdens is used in defence or in criticism of such projects, an analysis of the conceptual framework within which such arguments are set will shed light on the validity of the arguments. In the analysis that follows we suggest that whilst the concept of global public goods might be a useful strategy for human genomic databases, there are factors which count against it as a useful strategy. In particular, issues of race and ethnicity may be relevant factors, and these may present problems with the concept in several ways.