Participants of oncologic clinical trials: profile and aspects involved in their decisions

Detalhes bibliográficos
Autor(a) principal: Amorim, Karla Patrícia Cardoso
Data de Publicação: 2022
Outros Autores: Garrafa, Volnei, Melo, Alana Dantas de, Costa, Andressa Vellasco Brito, Oliveira, Gabriella Caldas Leonardo, Lopes, Heitor Giovanni, Pereira, Eduardo Judene da Silva, Fernandes Júnior, Francisco Ademar
Tipo de documento: Artigo
Idioma: por
Título da fonte: Trabalho, Educação e Saúde (Online)
Texto Completo: https://www.tes.epsjv.fiocruz.br/index.php/tes/article/view/1006
Resumo: This is a study about the participants of clinical trials in the field of oncology that discusses the paradox between scientific advances and social inequality. We sought to get to know these people and to analyze the aspects involved in their decisions based on interviews and documents. Female participation was more expressive. The participants tend to have low schooling and low income. Most of them are retirees and housewives, and do not get assistance from the private health system. Their decisions revolved around the search for cure or recovery, as well as for the assurance of regular access to comprehensive health care and medicines. Signing the free and informed consent form did not guarantee the expression of autonomy, because crucial information, such as the goals, risks and post-study care are virtually unknown. The research participants tend to not understand the goals of the investigation, or they overestimate the direct medical benefits of their participation, and they tend to be unaware of the risks involved and of what does a research mean. The results should stimulate more critical practices and dialogues among the different players and institutions involved in the field of the research with human subjects, with the goal of promoting a science that is conscious and responsible, and that prevents people from being put in situations of inequality, vulnerability and moral suffering.
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spelling Participants of oncologic clinical trials: profile and aspects involved in their decisionsParticipantes de ensayos clínicos en oncología: perfil y aspectos implicados en sus decisionesParticipantes de ensaios clínicos em oncologia: perfil e aspectos envolvidos nas suas decisõessujeitos de pesquisaensaios clínicosiniquidade socialética em pesquisaneoplasiasresearch subjectsclinical trialssocial inequalityethics in researchneoplasiassujetos de investigaciónensayos clínicosdesigualdad socialética en investigaciónneoplasiasThis is a study about the participants of clinical trials in the field of oncology that discusses the paradox between scientific advances and social inequality. We sought to get to know these people and to analyze the aspects involved in their decisions based on interviews and documents. Female participation was more expressive. The participants tend to have low schooling and low income. Most of them are retirees and housewives, and do not get assistance from the private health system. Their decisions revolved around the search for cure or recovery, as well as for the assurance of regular access to comprehensive health care and medicines. Signing the free and informed consent form did not guarantee the expression of autonomy, because crucial information, such as the goals, risks and post-study care are virtually unknown. The research participants tend to not understand the goals of the investigation, or they overestimate the direct medical benefits of their participation, and they tend to be unaware of the risks involved and of what does a research mean. The results should stimulate more critical practices and dialogues among the different players and institutions involved in the field of the research with human subjects, with the goal of promoting a science that is conscious and responsible, and that prevents people from being put in situations of inequality, vulnerability and moral suffering.Estudio sobre los participantes de ensayos clínicos en el área de oncología, discutiendo la paradoja entre avance científico y desigualdad social. Se buscó conocer quiénes son esas personas y analizar los aspectos involucrados en sus decisiones, con base en entrevistas y documentos. Hubo mayor participación femenina. La tendencia es que los participantes tienen pocos años de estudio formal y bajos ingresos. La mayoría es jubilada y ama de casa, y no tiene asistencia médica privada. Sus decisiones giraron en torno a la búsqueda de la cura o una mejora, y el acceso regular garantizado a la atención médica integral y a los medicamentos. La firma del formulario de consentimiento voluntario e informado no constituyó una expresión de autonomía, ya que información esencial como objetivos, riesgos y cuidados posteriores al estudio es prácticamente desconocida. Los participantes de la investigación tienden a no comprender los objetivos de la investigación, o sobreestiman los beneficios médicos directos de su participación, sin ser conscientes de los riesgos implicados y lo que significa una investigación. Los resultados deberían incitar al ejercicio y al diálogo más críticos entre los diferentes actores e instituciones involucrados en el área de la investigación con seres humanos, a fin de promover un entendimiento consciente y responsable, que impida que las personas sean colocadas en situación de desigualdad, vulnerabilidad y sufrimiento moral.Estudo sobre os participantes de ensaios clínicos na área de oncologia, discutindo o paradoxo entre progresso científico e iniquidade social. Buscou-se conhecer quem são essas pessoas e analisar aspectos envolvidos nas suas decisões, com base em entrevistas e documentos. Houve maior participação feminina. Os participantes tendem a ter poucos anos de estudo formal e baixa renda. A maioria é aposentada e do lar e não tem assistência à saúde privada. Suas decisões giraram em torno da busca pela cura ou melhora, e pela garantia de acesso regular a cuidados integrais de saúde e medicamentos. A assinatura do termo de consentimento livre e esclarecido não garantiu a expressão da autonomia, pois informações essenciais como os objetivos, riscos e cuidados pós-estudo são praticamente desconhecidas. Os participantes da pesquisa tendem a não compreender os objetivos da investigação, ou superestimam os benefícios médicos diretos de sua participação, sem consciência dos riscos envolvidos e do que significa uma pesquisa. Os resultados deveriam incitar ao exercício e ao diálogo mais críticos entre os diferentes atores e instituições envolvidos na área da pesquisa com seres humanos, objetivando promover uma ciência consciente e responsável, que impeça que pessoas sejam colocadas em situação de desigualdade, vulnerabilidade e sofrimento moral.Escola Politécnica de Saúde Joaquim Venâncio, Fundação Oswaldo Cruz2022-07-15info:eu-repo/semantics/articleinfo:eu-repo/semantics/publishedVersionArtigo Avaliado pelos paresapplication/pdfhttps://www.tes.epsjv.fiocruz.br/index.php/tes/article/view/100610.1590/1981-7746-sol00139Trabalho, Educação e Saúde; v. 16 n. 3 (2018)1981-7746reponame:Trabalho, Educação e Saúde (Online)instname:Fundação Oswaldo Cruz (FIOCRUZ)instacron:FIOCRUZporhttps://www.tes.epsjv.fiocruz.br/index.php/tes/article/view/1006/262Copyright (c) 2022 Fundação Oswaldo Cruz, Escola Politécnica de Saúde Joaquim Venânciohttps://creativecommons.org/licenses/by/4.0info:eu-repo/semantics/openAccessAmorim, Karla Patrícia Cardoso Garrafa, Volnei Melo, Alana Dantas de Costa, Andressa Vellasco Brito Oliveira, Gabriella Caldas Leonardo Lopes, Heitor Giovanni Pereira, Eduardo Judene da Silva Fernandes Júnior, Francisco Ademar 2022-07-15T17:42:05Zoai:ojs.pkp.sfu.ca:article/1006Revistahttps://www.tes.epsjv.fiocruz.br/index.php/tesPUBhttps://www.tes.epsjv.fiocruz.br/index.php/tes/oairevtes@fiocruz.br1981-77461678-1007opendoar:2024-03-06T13:01:04.042021Trabalho, Educação e Saúde (Online) - Fundação Oswaldo Cruz (FIOCRUZ)true
dc.title.none.fl_str_mv Participants of oncologic clinical trials: profile and aspects involved in their decisions
Participantes de ensayos clínicos en oncología: perfil y aspectos implicados en sus decisiones
Participantes de ensaios clínicos em oncologia: perfil e aspectos envolvidos nas suas decisões
title Participants of oncologic clinical trials: profile and aspects involved in their decisions
spellingShingle Participants of oncologic clinical trials: profile and aspects involved in their decisions
Amorim, Karla Patrícia Cardoso
sujeitos de pesquisa
ensaios clínicos
iniquidade social
ética em pesquisa
neoplasias
research subjects
clinical trials
social inequality
ethics in research
neoplasias
sujetos de investigación
ensayos clínicos
desigualdad social
ética en investigación
neoplasias
title_short Participants of oncologic clinical trials: profile and aspects involved in their decisions
title_full Participants of oncologic clinical trials: profile and aspects involved in their decisions
title_fullStr Participants of oncologic clinical trials: profile and aspects involved in their decisions
title_full_unstemmed Participants of oncologic clinical trials: profile and aspects involved in their decisions
title_sort Participants of oncologic clinical trials: profile and aspects involved in their decisions
author Amorim, Karla Patrícia Cardoso
author_facet Amorim, Karla Patrícia Cardoso
Garrafa, Volnei
Melo, Alana Dantas de
Costa, Andressa Vellasco Brito
Oliveira, Gabriella Caldas Leonardo
Lopes, Heitor Giovanni
Pereira, Eduardo Judene da Silva
Fernandes Júnior, Francisco Ademar
author_role author
author2 Garrafa, Volnei
Melo, Alana Dantas de
Costa, Andressa Vellasco Brito
Oliveira, Gabriella Caldas Leonardo
Lopes, Heitor Giovanni
Pereira, Eduardo Judene da Silva
Fernandes Júnior, Francisco Ademar
author2_role author
author
author
author
author
author
author
dc.contributor.author.fl_str_mv Amorim, Karla Patrícia Cardoso
Garrafa, Volnei
Melo, Alana Dantas de
Costa, Andressa Vellasco Brito
Oliveira, Gabriella Caldas Leonardo
Lopes, Heitor Giovanni
Pereira, Eduardo Judene da Silva
Fernandes Júnior, Francisco Ademar
dc.subject.por.fl_str_mv sujeitos de pesquisa
ensaios clínicos
iniquidade social
ética em pesquisa
neoplasias
research subjects
clinical trials
social inequality
ethics in research
neoplasias
sujetos de investigación
ensayos clínicos
desigualdad social
ética en investigación
neoplasias
topic sujeitos de pesquisa
ensaios clínicos
iniquidade social
ética em pesquisa
neoplasias
research subjects
clinical trials
social inequality
ethics in research
neoplasias
sujetos de investigación
ensayos clínicos
desigualdad social
ética en investigación
neoplasias
description This is a study about the participants of clinical trials in the field of oncology that discusses the paradox between scientific advances and social inequality. We sought to get to know these people and to analyze the aspects involved in their decisions based on interviews and documents. Female participation was more expressive. The participants tend to have low schooling and low income. Most of them are retirees and housewives, and do not get assistance from the private health system. Their decisions revolved around the search for cure or recovery, as well as for the assurance of regular access to comprehensive health care and medicines. Signing the free and informed consent form did not guarantee the expression of autonomy, because crucial information, such as the goals, risks and post-study care are virtually unknown. The research participants tend to not understand the goals of the investigation, or they overestimate the direct medical benefits of their participation, and they tend to be unaware of the risks involved and of what does a research mean. The results should stimulate more critical practices and dialogues among the different players and institutions involved in the field of the research with human subjects, with the goal of promoting a science that is conscious and responsible, and that prevents people from being put in situations of inequality, vulnerability and moral suffering.
publishDate 2022
dc.date.none.fl_str_mv 2022-07-15
dc.type.driver.fl_str_mv info:eu-repo/semantics/article
info:eu-repo/semantics/publishedVersion
Artigo Avaliado pelos pares
format article
status_str publishedVersion
dc.identifier.uri.fl_str_mv https://www.tes.epsjv.fiocruz.br/index.php/tes/article/view/1006
10.1590/1981-7746-sol00139
url https://www.tes.epsjv.fiocruz.br/index.php/tes/article/view/1006
identifier_str_mv 10.1590/1981-7746-sol00139
dc.language.iso.fl_str_mv por
language por
dc.relation.none.fl_str_mv https://www.tes.epsjv.fiocruz.br/index.php/tes/article/view/1006/262
dc.rights.driver.fl_str_mv Copyright (c) 2022 Fundação Oswaldo Cruz, Escola Politécnica de Saúde Joaquim Venâncio
https://creativecommons.org/licenses/by/4.0
info:eu-repo/semantics/openAccess
rights_invalid_str_mv Copyright (c) 2022 Fundação Oswaldo Cruz, Escola Politécnica de Saúde Joaquim Venâncio
https://creativecommons.org/licenses/by/4.0
eu_rights_str_mv openAccess
dc.format.none.fl_str_mv application/pdf
dc.publisher.none.fl_str_mv Escola Politécnica de Saúde Joaquim Venâncio, Fundação Oswaldo Cruz
publisher.none.fl_str_mv Escola Politécnica de Saúde Joaquim Venâncio, Fundação Oswaldo Cruz
dc.source.none.fl_str_mv Trabalho, Educação e Saúde; v. 16 n. 3 (2018)
1981-7746
reponame:Trabalho, Educação e Saúde (Online)
instname:Fundação Oswaldo Cruz (FIOCRUZ)
instacron:FIOCRUZ
instname_str Fundação Oswaldo Cruz (FIOCRUZ)
instacron_str FIOCRUZ
institution FIOCRUZ
reponame_str Trabalho, Educação e Saúde (Online)
collection Trabalho, Educação e Saúde (Online)
repository.name.fl_str_mv Trabalho, Educação e Saúde (Online) - Fundação Oswaldo Cruz (FIOCRUZ)
repository.mail.fl_str_mv revtes@fiocruz.br
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