Citizens under the umbrella: citizenship projects and the development of genetic umbrella organizations in the USA and the UK

Abstract

Social scientists have observed previously that patient support groups began to have significant influence over both research and clinical services of medical genetics in the early 2000s. This observation led to the idea of genetic citizenship, suggesting that the active participation and intervention of patient support groups in the rapidly growing field of medicine marked the emergence of a new form of citizenship. To understand how this citizenship emerged, this paper examines the development of umbrella organizations of genetic support groups in the USA and the UK. The historical analysis demonstrates that the ways in which these organizations developed differ considerably, and that their visions and activities reflected the different structural and cultural organizations of medical genetics in their respective countries. By recognizing the early work of these organizations as citizenship projects, this article argues that they helped rather different forms of genetic citizenship to emerge in the two countries.