Voluntariness in clinical research at the end of life

Title

Voluntariness in clinical research at the end of life

Creator

Agrawal M

Publisher

Journal Of Pain And Symptom Management

Date

2003

Subject

Humans; Terminally Ill; Research; Ethics; Biomedical and Behavioral Research; Multi-site Ethics; Human Experimentation/ethics

Description

Voluntariness is a requirement that is frequently voiced in research ethics but is poorly understood. This article seeks to clarify voluntariness and assess its significance in clinical research at the end of life. First, what voluntariness is and why we consider it important is considered. Next, where voluntariness fits in the overall context of making clinical research ethical is clarified. Finally, the murky terms "vulnerability," "exploitation," and "coercion" are clarified and their relationship to voluntariness examined. The danger of using some of these terms is that they carry a lot of moral weight and labeling patients as "vulnerable" or "coerced" can close off conversation because they are reflexively associated with unethical research. Finally, correctly characterized threats to voluntariness are examined and ways to ameliorate them are presented.
2003

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Type

Journal Article

Citation List Month

Backlog

Citation

Agrawal M, “Voluntariness in clinical research at the end of life,” Pediatric Palliative Care Library, accessed March 28, 2024, https://pedpalascnetlibrary.omeka.net/items/show/13006.