Trabalho, Educação e Saúde - TES (Work, Education and Health) is an open access scientific journal, edited by the Joaquim Venâncio Polytechnic School of Health, from Oswaldo Cruz Foundation.

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

  • Karla Patrícia Cardoso Amorim
  • Volnei Garrafa
  • Alana Dantas de Melo
  • Andressa Vellasco Brito Costa
  • Gabriella Caldas Leonardo Oliveira
  • Heitor Giovanni Lopes
  • Eduardo Judene da Silva Pereira
  • Francisco Ademar Fernandes Júnior
  • Karla Patrícia Cardoso Amorim

    Universidade Federal do Rio Grande do Norte, Departamento de Medicina Clínica, Natal, Rio Grande do Norte, Brasil.

    Volnei Garrafa

    Universidade de Brasília, Programa de Pós-Graduação em Bioética, Brasília, Distrito Federal, Brasil.

    Alana Dantas de Melo

    Universidade Federal do Rio Grande do Norte, Natal, Rio Grande do Norte, Brasil.

    Andressa Vellasco Brito Costa

    Universidade Federal do Rio Grande do Norte, Natal, Rio Grande do Norte, Brasil.

    Gabriella Caldas Leonardo Oliveira

    Universidade Federal do Rio Grande do Norte, Natal, Rio Grande do Norte, Brasil.

    Heitor Giovanni Lopes

    Universidade Federal do Rio Grande do Norte, Natal, Rio Grande do Norte, Brasil.

    Eduardo Judene da Silva Pereira

    Universidade Federal do Rio Grande do Norte, Natal, Rio Grande do Norte, Brasil.

    Francisco Ademar Fernandes Júnior

    Universidade Federal do Rio Grande do Norte, Natal, Rio Grande do Norte, Brasil.



Abstract

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.

Keywords

research subjects,
clinical trials,
social inequality,
ethics in research,
neoplasias

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Copyright (c) 2022 Fundação Oswaldo Cruz, Escola Politécnica de Saúde Joaquim Venâncio

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