Health and the Value of Inheritance: The meanings surrounding a rare genetic disease
Autor(a) principal: | |
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Data de Publicação: | 2015 |
Tipo de documento: | Artigo |
Idioma: | eng |
Título da fonte: | Vibrant |
Texto Completo: | http://old.scielo.br/scielo.php?script=sci_arttext&pid=S1809-43412015000100109 |
Resumo: | In this article I explore the meanings acquired by the notion of 'genetic inheritance' for families in Rio de Janeiro affected by a rare hereditary disorder, Machado-Joseph disease. My analysis examines three points: 1) how experience of the disease was thematized in the family prior to knowledge of its genetic and hereditary origin; 2) how knowledge of genetics affected the family's perception of their health and reproduction through the notion of risk contained in medical explanations; 3) finally, I problematize the meanings of 'hope,' a sentiment frequently cited by people with the disease and their descendants. Notably, despite the high value attributed to science and 'medical progress,' the use of certain biotechnologies is not always seen as positive or capable of enabling choices and actions in response to a rare disease. Notions of risk, responsibility and hope thus acquire singular contours for managing life and the continuity of the family. |
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Health and the Value of Inheritance: The meanings surrounding a rare genetic diseaseRare Genetic DiseaseMachado-Joseph DiseaseGenetic InheritanceFamily and KinshipHopeIn this article I explore the meanings acquired by the notion of 'genetic inheritance' for families in Rio de Janeiro affected by a rare hereditary disorder, Machado-Joseph disease. My analysis examines three points: 1) how experience of the disease was thematized in the family prior to knowledge of its genetic and hereditary origin; 2) how knowledge of genetics affected the family's perception of their health and reproduction through the notion of risk contained in medical explanations; 3) finally, I problematize the meanings of 'hope,' a sentiment frequently cited by people with the disease and their descendants. Notably, despite the high value attributed to science and 'medical progress,' the use of certain biotechnologies is not always seen as positive or capable of enabling choices and actions in response to a rare disease. Notions of risk, responsibility and hope thus acquire singular contours for managing life and the continuity of the family.Associação Brasileira de Antropologia (ABA)2015-06-01info:eu-repo/semantics/articleinfo:eu-repo/semantics/publishedVersiontext/htmlhttp://old.scielo.br/scielo.php?script=sci_arttext&pid=S1809-43412015000100109Vibrant: Virtual Brazilian Anthropology v.12 n.1 2015reponame:Vibrantinstname:Associação Brasileira de Antropologiainstacron:ABA10.1590/1809-43412015v12n1p109info:eu-repo/semantics/openAccessAureliano,Waleska de Araújoeng2015-07-14T00:00:00Zoai:scielo:S1809-43412015000100109Revistahttp://www.vibrant.org.br/https://old.scielo.br/oai/scielo-oai.phpvibrant.aba@gmail.com1809-43411809-4341opendoar:2015-07-14T00:00Vibrant - Associação Brasileira de Antropologiafalse |
dc.title.none.fl_str_mv |
Health and the Value of Inheritance: The meanings surrounding a rare genetic disease |
title |
Health and the Value of Inheritance: The meanings surrounding a rare genetic disease |
spellingShingle |
Health and the Value of Inheritance: The meanings surrounding a rare genetic disease Aureliano,Waleska de Araújo Rare Genetic Disease Machado-Joseph Disease Genetic Inheritance Family and Kinship Hope |
title_short |
Health and the Value of Inheritance: The meanings surrounding a rare genetic disease |
title_full |
Health and the Value of Inheritance: The meanings surrounding a rare genetic disease |
title_fullStr |
Health and the Value of Inheritance: The meanings surrounding a rare genetic disease |
title_full_unstemmed |
Health and the Value of Inheritance: The meanings surrounding a rare genetic disease |
title_sort |
Health and the Value of Inheritance: The meanings surrounding a rare genetic disease |
author |
Aureliano,Waleska de Araújo |
author_facet |
Aureliano,Waleska de Araújo |
author_role |
author |
dc.contributor.author.fl_str_mv |
Aureliano,Waleska de Araújo |
dc.subject.por.fl_str_mv |
Rare Genetic Disease Machado-Joseph Disease Genetic Inheritance Family and Kinship Hope |
topic |
Rare Genetic Disease Machado-Joseph Disease Genetic Inheritance Family and Kinship Hope |
description |
In this article I explore the meanings acquired by the notion of 'genetic inheritance' for families in Rio de Janeiro affected by a rare hereditary disorder, Machado-Joseph disease. My analysis examines three points: 1) how experience of the disease was thematized in the family prior to knowledge of its genetic and hereditary origin; 2) how knowledge of genetics affected the family's perception of their health and reproduction through the notion of risk contained in medical explanations; 3) finally, I problematize the meanings of 'hope,' a sentiment frequently cited by people with the disease and their descendants. Notably, despite the high value attributed to science and 'medical progress,' the use of certain biotechnologies is not always seen as positive or capable of enabling choices and actions in response to a rare disease. Notions of risk, responsibility and hope thus acquire singular contours for managing life and the continuity of the family. |
publishDate |
2015 |
dc.date.none.fl_str_mv |
2015-06-01 |
dc.type.driver.fl_str_mv |
info:eu-repo/semantics/article |
dc.type.status.fl_str_mv |
info:eu-repo/semantics/publishedVersion |
format |
article |
status_str |
publishedVersion |
dc.identifier.uri.fl_str_mv |
http://old.scielo.br/scielo.php?script=sci_arttext&pid=S1809-43412015000100109 |
url |
http://old.scielo.br/scielo.php?script=sci_arttext&pid=S1809-43412015000100109 |
dc.language.iso.fl_str_mv |
eng |
language |
eng |
dc.relation.none.fl_str_mv |
10.1590/1809-43412015v12n1p109 |
dc.rights.driver.fl_str_mv |
info:eu-repo/semantics/openAccess |
eu_rights_str_mv |
openAccess |
dc.format.none.fl_str_mv |
text/html |
dc.publisher.none.fl_str_mv |
Associação Brasileira de Antropologia (ABA) |
publisher.none.fl_str_mv |
Associação Brasileira de Antropologia (ABA) |
dc.source.none.fl_str_mv |
Vibrant: Virtual Brazilian Anthropology v.12 n.1 2015 reponame:Vibrant instname:Associação Brasileira de Antropologia instacron:ABA |
instname_str |
Associação Brasileira de Antropologia |
instacron_str |
ABA |
institution |
ABA |
reponame_str |
Vibrant |
collection |
Vibrant |
repository.name.fl_str_mv |
Vibrant - Associação Brasileira de Antropologia |
repository.mail.fl_str_mv |
vibrant.aba@gmail.com |
_version_ |
1754302960606642176 |