From ‘Me’ to ‘Us’: solidarity and biocitizenship in the Brazilian cancer precision medicine innovation system
Autor(a) principal: | |
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Data de Publicação: | 2019 |
Outros Autores: | , |
Tipo de documento: | Artigo |
Idioma: | eng |
Título da fonte: | Saude em Debate |
Texto Completo: | http://old.scielo.br/scielo.php?script=sci_arttext&pid=S0103-11042019000600114 |
Resumo: | ABSTRACT As biotechnology innovations move from the bench to the bedside and, recently, also to the Internet, a myriad of emanating challenges and potentials may rise under distinct sociocultural and political economic contexts. Using a grounded-theory-inspired case study focused on the Brazilian research consortium for Medullary Endocrine Neoplasia type 2 (BrasMEN) – an inherited syndrome where genetic tests define cost-effective interventions – we outline facilitators and barriers to both development and implementation of a ‘public health genomics’ strategy under a developing country scenario. The study is based on participant observation at three centres and interviews with all who might hold an interest in MEN2 around Brazil. We discuss how a ‘solidarity’-based motivation for individual and collective ‘biocitizenship’ is driving people’s pre-emptive actions for accessing and making personalised healthcare available at Brazil’s Unified Health System (SUS) via the ‘co-production’ of science, technology and the culture for precision medicine – termed Brazil’s ‘hidden’ biomedical innovation system. Given the establishment of BrasMEN as ‘solidarity networks’ – promoting and supporting the cancer precision medicine’s rationale – our data illustrates how a series of new bioethical challenges raise from such engagement with familial cancer genomics under Brazil’s developing country scenario and how this social/soft technology constitute a solution for Euro/North American societies. |
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From ‘Me’ to ‘Us’: solidarity and biocitizenship in the Brazilian cancer precision medicine innovation systemScience, technology and societyTechnological development and innovation projectsMultiple Endocrine Neoplasia Type 2SolidarityBrazilABSTRACT As biotechnology innovations move from the bench to the bedside and, recently, also to the Internet, a myriad of emanating challenges and potentials may rise under distinct sociocultural and political economic contexts. Using a grounded-theory-inspired case study focused on the Brazilian research consortium for Medullary Endocrine Neoplasia type 2 (BrasMEN) – an inherited syndrome where genetic tests define cost-effective interventions – we outline facilitators and barriers to both development and implementation of a ‘public health genomics’ strategy under a developing country scenario. The study is based on participant observation at three centres and interviews with all who might hold an interest in MEN2 around Brazil. We discuss how a ‘solidarity’-based motivation for individual and collective ‘biocitizenship’ is driving people’s pre-emptive actions for accessing and making personalised healthcare available at Brazil’s Unified Health System (SUS) via the ‘co-production’ of science, technology and the culture for precision medicine – termed Brazil’s ‘hidden’ biomedical innovation system. Given the establishment of BrasMEN as ‘solidarity networks’ – promoting and supporting the cancer precision medicine’s rationale – our data illustrates how a series of new bioethical challenges raise from such engagement with familial cancer genomics under Brazil’s developing country scenario and how this social/soft technology constitute a solution for Euro/North American societies.Centro Brasileiro de Estudos de Saúde2019-11-01info:eu-repo/semantics/articleinfo:eu-repo/semantics/publishedVersiontext/htmlhttp://old.scielo.br/scielo.php?script=sci_arttext&pid=S0103-11042019000600114Saúde em Debate v.43 n.spe2 2019reponame:Saude em Debateinstname:Centro Brasileiro de Estudos de Saudeinstacron:CBES10.1590/0103-11042019s209info:eu-repo/semantics/openAccessSousa,Maria Sharmila Alina deGallian,Dante Marcello ClaramonteMaciel,Rui Monteiro de Barroseng2020-02-05T00:00:00Zoai:scielo:S0103-11042019000600114Revistahttp://www.scielo.br/scielo.php?script=sci_serial&pid=0103-1104&lng=en&nrm=isohttps://old.scielo.br/oai/scielo-oai.phprevista@saudeemdebate.org.br2358-28980103-1104opendoar:2020-02-05T00:00Saude em Debate - Centro Brasileiro de Estudos de Saudefalse |
dc.title.none.fl_str_mv |
From ‘Me’ to ‘Us’: solidarity and biocitizenship in the Brazilian cancer precision medicine innovation system |
title |
From ‘Me’ to ‘Us’: solidarity and biocitizenship in the Brazilian cancer precision medicine innovation system |
spellingShingle |
From ‘Me’ to ‘Us’: solidarity and biocitizenship in the Brazilian cancer precision medicine innovation system Sousa,Maria Sharmila Alina de Science, technology and society Technological development and innovation projects Multiple Endocrine Neoplasia Type 2 Solidarity Brazil |
title_short |
From ‘Me’ to ‘Us’: solidarity and biocitizenship in the Brazilian cancer precision medicine innovation system |
title_full |
From ‘Me’ to ‘Us’: solidarity and biocitizenship in the Brazilian cancer precision medicine innovation system |
title_fullStr |
From ‘Me’ to ‘Us’: solidarity and biocitizenship in the Brazilian cancer precision medicine innovation system |
title_full_unstemmed |
From ‘Me’ to ‘Us’: solidarity and biocitizenship in the Brazilian cancer precision medicine innovation system |
title_sort |
From ‘Me’ to ‘Us’: solidarity and biocitizenship in the Brazilian cancer precision medicine innovation system |
author |
Sousa,Maria Sharmila Alina de |
author_facet |
Sousa,Maria Sharmila Alina de Gallian,Dante Marcello Claramonte Maciel,Rui Monteiro de Barros |
author_role |
author |
author2 |
Gallian,Dante Marcello Claramonte Maciel,Rui Monteiro de Barros |
author2_role |
author author |
dc.contributor.author.fl_str_mv |
Sousa,Maria Sharmila Alina de Gallian,Dante Marcello Claramonte Maciel,Rui Monteiro de Barros |
dc.subject.por.fl_str_mv |
Science, technology and society Technological development and innovation projects Multiple Endocrine Neoplasia Type 2 Solidarity Brazil |
topic |
Science, technology and society Technological development and innovation projects Multiple Endocrine Neoplasia Type 2 Solidarity Brazil |
description |
ABSTRACT As biotechnology innovations move from the bench to the bedside and, recently, also to the Internet, a myriad of emanating challenges and potentials may rise under distinct sociocultural and political economic contexts. Using a grounded-theory-inspired case study focused on the Brazilian research consortium for Medullary Endocrine Neoplasia type 2 (BrasMEN) – an inherited syndrome where genetic tests define cost-effective interventions – we outline facilitators and barriers to both development and implementation of a ‘public health genomics’ strategy under a developing country scenario. The study is based on participant observation at three centres and interviews with all who might hold an interest in MEN2 around Brazil. We discuss how a ‘solidarity’-based motivation for individual and collective ‘biocitizenship’ is driving people’s pre-emptive actions for accessing and making personalised healthcare available at Brazil’s Unified Health System (SUS) via the ‘co-production’ of science, technology and the culture for precision medicine – termed Brazil’s ‘hidden’ biomedical innovation system. Given the establishment of BrasMEN as ‘solidarity networks’ – promoting and supporting the cancer precision medicine’s rationale – our data illustrates how a series of new bioethical challenges raise from such engagement with familial cancer genomics under Brazil’s developing country scenario and how this social/soft technology constitute a solution for Euro/North American societies. |
publishDate |
2019 |
dc.date.none.fl_str_mv |
2019-11-01 |
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=S0103-11042019000600114 |
url |
http://old.scielo.br/scielo.php?script=sci_arttext&pid=S0103-11042019000600114 |
dc.language.iso.fl_str_mv |
eng |
language |
eng |
dc.relation.none.fl_str_mv |
10.1590/0103-11042019s209 |
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 |
Centro Brasileiro de Estudos de Saúde |
publisher.none.fl_str_mv |
Centro Brasileiro de Estudos de Saúde |
dc.source.none.fl_str_mv |
Saúde em Debate v.43 n.spe2 2019 reponame:Saude em Debate instname:Centro Brasileiro de Estudos de Saude instacron:CBES |
instname_str |
Centro Brasileiro de Estudos de Saude |
instacron_str |
CBES |
institution |
CBES |
reponame_str |
Saude em Debate |
collection |
Saude em Debate |
repository.name.fl_str_mv |
Saude em Debate - Centro Brasileiro de Estudos de Saude |
repository.mail.fl_str_mv |
revista@saudeemdebate.org.br |
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1754209000142929920 |