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Inclusion and exclusion in the globalisation of genomics; the case of rare genetic disease in Brazil

Gibbon, S; Aureliano, W; (2018) Inclusion and exclusion in the globalisation of genomics; the case of rare genetic disease in Brazil. Anthropology & Medicine , 25 (1) pp. 11-29. 10.1080/13648470.2017.1381230. Green open access

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Abstract

Within the context of a globalising agenda for genetic research where 'global health' is increasingly seen as necessarily informed by and having to account for genomics, the focus on rare genetic diseases is becoming prominent. Drawing from ethnographic research carried out separately by both authors in Brazil, this paper examines how an emerging focus on two different arenas of rare genetic disease, cancer genetics and a class of degenerative neurological diseases known as Ataxias, is subject to and a product of the dynamics of inclusion and exclusion as this concerns participation in research and access to health care. It examines how in these different cases 'rarenesss' has been diversely situated and differently politicised and how clinicians, patients and their families grapple with the slippery boundaries between research, rights to health and the limits of care, therapy or prevention. It illustrates how attention to rare genetic disease in Brazil emerges at the intersection of a particular history of genetic research and public health infrastructure, densely complicated feedback loops between clinical care and research, patient mobilisation around the 'judicialisation' of health and recent state legislation regarding rare disease in Brazil. It highlights the relevance of local configurations in the way rare genetic disease is being made relevant for and by different communities.

Type: Article
Title: Inclusion and exclusion in the globalisation of genomics; the case of rare genetic disease in Brazil
Location: England
Open access status: An open access version is available from UCL Discovery
DOI: 10.1080/13648470.2017.1381230
Publisher version: http://dx.doi.org/10.1080/13648470.2017.1381230
Language: English
Additional information: © 2018 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/ licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
Keywords: Brazil, genetics, inclusion/exclusion, rare disease, Adult, Anthropology, Medical, Brazil, Child, Female, Genetic Diseases, Inborn, Genomics, Humans, Infant, Internationality, Male, Middle Aged, Rare Diseases
UCL classification: UCL
UCL > Provost and Vice Provost Offices
UCL > Provost and Vice Provost Offices > UCL SLASH
UCL > Provost and Vice Provost Offices > UCL SLASH > Faculty of S&HS
UCL > Provost and Vice Provost Offices > UCL SLASH > Faculty of S&HS > Dept of Anthropology
URI: https://discovery.ucl.ac.uk/id/eprint/10046727
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