Profiles and voices of participants in clinical research in Brazil

Authors

Abstract

This case study aimed to trace the socioeconomic profile of participants in clinical research at a Brazilian research center, analyzing their decisions, motivations, experiences, knowledge of risks, benefits and health care provided, and the consent process. The data of 327 participants were collected, and semi structured interviews conducted with 19 of them. In the research carried out at the center studied there was a greater participation of men and of people with few years of formal education and low income. Most are retired and have no private health plan, tend not to notice the effects of the investigation, or to overestimate its direct medical benefits. The search for medical treatment was the main factor influencing their decisions/participation, and signing the informed consent form did not guarantee the expression of autonomy. We concluded that the participants’ profile and speeches content are sensitive indicators of vulnerability and social inequality. 

Keywords:

Researcher-subject relations. Clinical trials as topic. Social vulnerability. Health equity. Socioeconomic factors. Ethics in research. Bioethics.

Author Biographies

Karla Patrícia Cardoso Amorim, Universidade Federal do Rio Grande do Norte - Departamento de Medicina Clínica

Pós-Doutorado em Bioética. Professora Associada II do Departamento de Medicina Clínica da UFRN, Natal, Rio Grande do Norte, Brasil. Professora permanente do Programa de Pós-graduação em Saúde Coletiva (PPGSCol) – UFRN. Vice-coordenadora do Mestrado Profissional em Saúde da Família – UFRN. Professora Colaboradora Programa de Pós-Graduação em Bioética da Universidade de Brasília.

Volnei Garrafa, Universidade de Brasília. Cátedra UNESCO/ Programa de Pós-Graduação em Bioética da Universidade de Brasília

Pós-Doutorado em Bioética. Professor Titular do Departamento de Saúde Coletiva da Faculdade de Ciências da Saúde da Universidade de Brasília. Coordenador da Cátedra UNESCO/ Programa de Pós-Graduação em Bioética da Universidade de Brasília.  Brasília, Distrito Federal, Brasil.

Alana Dantas de Melo

Médica/pesquisadora formada pela UFRN

Andressa Vellasco Brito Costa

Médica/pesquisadora formada pela UFRN

Gabriella Caldas Leonardo Oliveira

Médica/pesquisadora formada pela UFRN

Heitor Giovanni Lopes

Médico/pesquisador formado pela UFRN,

Eduardo Judene da Silva Pereira

Médico/pesquisador formado pela UFRN

Francisco Ademar Fernandes Júnior

Médico/pesquisador formado pela UFRN
Vol. 28 No. 4 (2020): Revista Bioética 28(4)

Published:

2020-12-21

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How to Cite

1.
Amorim KPC, Garrafa V, Melo AD de, Costa AVB, Oliveira GCL, Lopes HG, et al. Profiles and voices of participants in clinical research in Brazil. Rev. bioét.(Impr.). [Internet]. 2020 Dec. 21 [cited 2024 May 19];28(4). Available from: https://revistabioetica.cfm.org.br/revista_bioetica/article/view/2275