Abstract

BUSSO, Corina  and  LEON-SANZ, Pilar. RESEARCH WITH PATIENTS IN PALLIATIVE CARE: ETHICAL DILEMMAS AND PUBLIC PERCEPTION OF THEIR VULNERABILITY. AN EXPLORATORY STUDY. pers.bioét. [online]. 2016, vol.20, n.2, pp.132-150. ISSN 0123-3122.  https://doi.org/10.5294/PEBI.2016.20.2.2.

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.

Keywords : Palliative care; research; terminal illness; ethics; vulnerability; altruism.

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