In Experimental Hand Transplantation, Whose Views About Outcomes Should Matter Most?

AMA J Ethics. 2019 Nov 1;21(11):E936-942. doi: 10.1001/amajethics.2019.936.

Abstract

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.

Publication types

  • Case Reports

MeSH terms

  • Decision Making / ethics*
  • Hand Transplantation / ethics*
  • Hand Transplantation / psychology*
  • Humans
  • Informed Consent / ethics*
  • Informed Consent / psychology*
  • Male
  • Outcome Assessment, Health Care / ethics
  • Personal Autonomy
  • Professional-Patient Relations / ethics
  • Researcher-Subject Relations / ethics
  • Respect
  • Risk Assessment
  • Therapies, Investigational / ethics
  • Therapies, Investigational / psychology
  • Treatment Outcome
  • Uncertainty