RESEARCH WITH PATIENTS IN PALLIATIVE CARE: ETHICAL DILEMMAS AND PUBLIC PERCEPTION OF THEIR VULNERABILITY. AN EXPLORATORY STUDY

Authors

  • Corina Busso Author Universidad Austral (Buenos Aires, Argentina)
  • Pilar León-Sanz Author Universidad de Navarra.

Keywords:

Palliative care, research, terminal illness, ethics, vulnerability, altruism

Abstract

Patients who have an oncological disease and are in palliative care belong to a group that is often characterized as highly vulnerable, and their participation in clinical trials poses a number of ethical problems. This study is cross-sectional and analytic. In all, 82% of those who took part consider it ethical to conduct research with patients in palliative care, either to help other patients in the future (40%), in the hope of gaining some improvement (32%) or due to confidence in the physician-researcher (10%). The wide acceptance to participate in these research studies shows the potential benefits appear to exceed the merely therapeutic ones. Altruism, hoping to improve or the perception of continuing to "fight" the disease are aspects to bear in mind when evaluating respect for the autonomy of the persons involved.

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Author Biographies

Corina Busso, Universidad Austral (Buenos Aires, Argentina)

Médica dermatóloga del Hospital Universitario Austral

Profesora Adjunta de Dermatología de la Facultad de Ciencias Biomédicas de la Universidad Austral

Presidente del Comité Institucional de Evaluación de la Facultad de Ciencias Biomédicas de la Universidad Austral

Magister en Investigaciones Clínicas y Farmacológicas

Su investigación se centra en los dilemas éticos de la investigación con pacientes oncológicos en cuidados paliativos

Pilar León-Sanz, Universidad de Navarra.

Profesora Titular de Historia de la Medicina y Ética Médica y Colaboradora del proyecto "Cultura Emocional e Identidad” del ICS, Universidad de Navarra (UN). Vocal del Comité de ética de la Investigación de la UN (2007-), Secretaria de la Comisión de Deontología del Colegio Oficial de Médicos de Navarra (2009-) y de la Comisión de Ética y Deontología Médicas de la Clínica UN (2007-). Research Fellow at the Wellcome T C for the History of Medicine at UCL (2002, 2010), Visiting Scholar at Harvard University (2011). Su investigación incluye la teoría y prácticas médicas de los profesionales de la salud. Entre sus publicaciones más recientes están: "From Claims to Rights: Patient Complaints and the Evolution of a Mutual Aid Society” (en: Reinarz, J, Wynter, R. Complaints, Controversies and Grievances in Medicine. Routledge, 2014, 109-118); “El carácter terapéutico de la relación médico-paciente” (en: Emociones y estilos de vida. Radiografía de nuestro tiempo. Biblioteca Nueva, 2013, 101-130). Es coeditora del volumen Historia de la Ciencia y las emociones (Osiris, University of Chicago, en revisión).

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Published

2016-12-09

How to Cite

Busso, C., & León-Sanz, P. (2016). RESEARCH WITH PATIENTS IN PALLIATIVE CARE: ETHICAL DILEMMAS AND PUBLIC PERCEPTION OF THEIR VULNERABILITY. AN EXPLORATORY STUDY. Persona Y Bioética, 20(2), 150. Retrieved from https://personaybioetica.unisabana.edu.co/index.php/personaybioetica/article/view/132

Issue

Vol. 20 No. 2 (2016)

Section

Articles

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