Health Care Ethics in Vulnerable Populations: Clinical Research through the Patient's Eyes

Authors: Alexander V. Libin, Manon Schladen, Assya Pascalev, Nawar Shara, Miriam Philmon, Yuri Millo, Joseph Verbalis

Abstract:

Chronic conditions carry with them strong emotions and often lead to charged relationships between patients and their health providers and, by extension, patients and health researchers. Persons are both autonomous and relational and a purely cognitive model of autonomy neglects the social and relational basis of chronic illness. Ensuring genuine informed consent in research requires a thorough understanding of how participants perceive a study and their reasons for participation. Surveys may not capture the complexities of reasoning that underlies study participation. Contradictory reasons for participation, for instance an initial claim of altruism as rationale and a subsequent claim of personal benefit (therapeutic misconception), affect the quality of informed consent. Individuals apply principles through the filter of personal values and lived experience. Authentic autonomy, and hence authentic consent to research, occurs within the context of patients- unique life narratives and illness experiences.

Keywords: ethical dilemmas, open source technology, patient education, psychology of decision making

Digital Object Identifier (DOI): doi.org/10.5281/zenodo.1333318

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