Consent to any experimental procedure, even when offered as therapeutic, involves extensive discussion between patient-subjects and clinician-researchers. Decision making should be shared with a focus on potential risks and benefits of enrolling in a protocol. Just as patients who underwent nonexperimental interventions might experience regret or reconsider autonomously made choices, patient-subjects who are undergoing or who have undergone experimental therapies should be afforded latitude to reconsider their decisions. Although clinician-researchers tend to be deeply invested in gathering data about patient-subjects' experiences, they are obligated to express respect for patient-subjects' fundamental right to stop being enrolled in research.
CITATION STYLE
Di Martini, A., & Dew, M. A. (2019). In experimental hand transplantation, whose views about outcomes should matter most? AMA Journal of Ethics, 21(11), 936–942. https://doi.org/10.1001/amajethics.2019.936
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