Promoting Research with Organ Transplant Patients

Given the numerous questions related to patient selection, surgical technique, and posttransplant care requiring evidence-based answers, transplantation programs should be conducting research with patients waiting to receive an organ and those who have undergone organ transplantation. Yet, there continues to be a dearth of human subjects research in the field of transplantation medicine. Here, we discuss challenges that may deter transplantation programs from engaging in transplant-related research. Taking liver transplantation as our illustrative example, we explain the vulnerabilities of patients with end-stage organ failure and the complex ethical issues of decisional capacity, coercion, and the timing of study enrollment. Ultimately, we argue that all transplant candidates should be invited and encouraged to participate in research. We maintain that clinical care should be provided in the context of active research so that clinicians can further their understanding of transplantation medicine while also providing high-quality patient care. We suggest that early discussion with patients about participating in research and about a research advance directive may help to overcome reluctance about and the ethical challenges of transplantation research with human subjects.