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

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 interventi...

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Autor principal: Mikami, Koichi
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Routledge 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7195175/
https://www.ncbi.nlm.nih.gov/pubmed/32406397
http://dx.doi.org/10.1080/14636778.2019.1693889
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author Mikami, Koichi
author_facet Mikami, Koichi
author_sort Mikami, Koichi
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description 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.
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spelling pubmed-71951752020-05-11 Citizens under the umbrella: citizenship projects and the development of genetic umbrella organizations in the USA and the UK Mikami, Koichi New Genet Soc Articles 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. Routledge 2020-03-06 /pmc/articles/PMC7195175/ /pubmed/32406397 http://dx.doi.org/10.1080/14636778.2019.1693889 Text en © 2020 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group https://creativecommons.org/licenses/by/4.0/This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) ), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
spellingShingle Articles
Mikami, Koichi
Citizens under the umbrella: citizenship projects and the development of genetic umbrella organizations in the USA and the UK
title Citizens under the umbrella: citizenship projects and the development of genetic umbrella organizations in the USA and the UK
title_full Citizens under the umbrella: citizenship projects and the development of genetic umbrella organizations in the USA and the UK
title_fullStr Citizens under the umbrella: citizenship projects and the development of genetic umbrella organizations in the USA and the UK
title_full_unstemmed Citizens under the umbrella: citizenship projects and the development of genetic umbrella organizations in the USA and the UK
title_short Citizens under the umbrella: citizenship projects and the development of genetic umbrella organizations in the USA and the UK
title_sort citizens under the umbrella: citizenship projects and the development of genetic umbrella organizations in the usa and the uk
topic Articles
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7195175/
https://www.ncbi.nlm.nih.gov/pubmed/32406397
http://dx.doi.org/10.1080/14636778.2019.1693889
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