Exploring ‘The Research Experience’: Inviting those who work in research and whose who participate in research to narrate their experience and their expectations of research.
The philosopher Charles Fried refers to the ethical foundation of clinical care as the principle of ‘personal care.’ The goal of clinical care is to increase symptom relief and therapeutic benefits. In contrast, the goal of clinical research is to test an experimental medication or surgical procedure through the voluntary participation of research-subjects to produce data. Clinical research contributes to an increase in generalisable knowledge and secures the future practice of evidence-based care. Some of the clinical procedures or assessments that a research-subject may receive while participating in clinical research are not preformed exclusively on the basis on the research-subject’s well-being. When NHS patients participate in clinical research such as clinical trials, they consent to have procedures or assessments, such as scans and blood test. These assessments and procedures often do not provide any therapeutic benefits to patients; they provide data upon which the research hypothesis is judged. Clinical research can lead to better treatments but these benefits are only available after a protracted period of time. We can only determine if an experimental treatment has therapeutic value after patients have volunteers to participate as subjects in research. There is a disparity between the goals of clinical care and clinical research which could ethical conflict for patients and research staff. Appelbaum and Lidz argue that the principle of personal care is put in conflict with the imperatives of clinical research because the end goals of clinical research are inherently different to those of clinical care. My project aims to explore how patient-subjects narrate their experience and expectations of participating in clinical research and how do their expectations compare to those of research staff. Are there any conflicts between patients’ expectations of benefit from clinical research and the end objective of clinical research? If so, what are they?
Dr Gerry Lee
Pathway 3: Health, Biopolitics & Social Inequality
Challenges of an ‘infodemic’: Separating fact from fiction in a pandemic