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.

中文翻译：

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伞下的公民：美国和英国的公民项目和基因伞组织的发展


社会科学家此前观察到，2000 年代初期，患者支持团体开始对医学遗传学的研究和临床服务产生重大影响。这一观察结果引发了遗传公民身份的概念，表明患者支持团体在快速发展的医学领域的积极参与和干预标志着一种新形式公民身份的出现。为了了解这种公民身份是如何产生的，本文研究了美国和英国遗传支持团体伞式组织的发展。历史分析表明，这些组织的发展方式差异很大，其愿景和活动反映了各自国家医学遗传学组织的不同结构和文化。通过将这些组织的早期工作视为公民项目，本文认为它们帮助了两国出现了相当不同形式的遗传公民身份。