Date: Tuesday, June 4, 2019
Session Time: 2:30pm-4:00pm
Presentation Time: 3:42pm-3:54pm
Location: Room 309
*Purpose: Interventions on deceased donors or their organs hold promise for increasing the quantity and quality of organs for transplantation by minimizing organ injury and optimizing functionality. However, the transplant field is in debate over whether and how to obtain informed consent from transplant candidates offered intervention organs given time constraints intrinsic to allocation. Donor intervention research remains at a standstill until ethical, regulatory, and legal issues are resolved. This multi-center study aimed to assess waitlisted candidates’ preferences for informed consent if offered an organ from a donor after organ intervention.
*Methods: We conducted semi-structured interviews about candidates’ preferences for providing informed consent for organ intervention research, and willingness to accept a research organ and participate in intervention research.
*Results: Sixty-one candidates participated (44% participation rate). Most candidates (93%) agreed that organ research is worthwhile because it could increase organ availability, provide faster access to organs, provide better quality organs, and advance science. Most candidates (81%) were likely to accept a research organ if organ quality was good (defined as donor age 30), but far fewer candidates (26%) would accept a research organ if quality was only moderate (i.e., donor age 50). Most candidates (79%) desired being informed that the organ offered was a research organ before accepting it. Most candidates (82%) desired giving informed consent before accepting a research organ without further involvement in the research study. Giving informed consent before accepting a research organ was perceived by most candidates as important for making an informed decision, but was perceived by a few candidates as not necessary because they felt desperate to accept an organ and trusted their physician’s judgment. Half (57%) desired giving informed consent before accepting a research organ and allowing their medical record to be reviewed post-transplant to track the outcome of the transplant for research purposes. Consent for also allowing post-transplant medical chart review was perceived by some candidates as important for protecting their privacy, but perceived by others as unimportant because they did not view medical chart review as invasive or harmful. The majority (62%) desired giving informed consent before accepting a research organ and allowing researchers to collect post-transplant information from the candidate via clinical lab tests.
*Conclusions: This study offers novel insights into patients’ perspectives on organ donor intervention research. Preliminary findings suggest that most wait-listed candidates want informed consent prior to accepting a research organ and prior to post-transplant data collection about their outcomes.
To cite this abstract in AMA style:Gordon E, Knopf B, Mussell A, Phillips C, Veatch R, Abt P, Reese P. Patient Perspectives of Informed Consent for Deceased Donor Organ Intervention Research [abstract]. Am J Transplant. 2019; 19 (suppl 3). https://atcmeetingabstracts.com/abstract/patient-perspectives-of-informed-consent-for-deceased-donor-organ-intervention-research/. Accessed November 25, 2020.
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