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.

Keywords:

• New Genetics
• Genetic Citizenship
• Umbrella Organization

Acknowledgement

The author would like to thank Alastair Kent and Robert Cook-Deegan, who, as members of the project's advisory board, helped him to identify and gain access to important documents and interviewees for this study, and all the interviewees, who kindly agreed to take part in this study. He is also grateful to Steve Study for his generous support in developing and refining the argument presented here, and two anonymous reviewers for their valuable comments.

Disclosure statement

No potential conflict of interest was reported by the author.

ORCID

Koichi Mikami http://orcid.org/0000-0002-6274-4713

Additional information

Funding

This work was supported by the Wellcome Trust Senior Investigator Award to Professor Steve Sturdy, University of Edinburgh [grant number 100597/Z/12Z].