Waitlisted Patients’ Preferences for Accepting and Consenting to Transplantation with Experimentally Manipulated Organs
E. J. Gordon1, P. Abt2, C. Phillips2, F. Bermudez2, B. Knopf1, J. Lee1, R. Veatch3, R. Knight4, P. T. Conway4, J. Goldstein5, S. Dunn6, P. Reese2
1Northwestern University, Chicago, IL, 2University of Pennsylvania, Philadelphia, PA, 3Georgetown University, Washington, DC, 4American Association of Kidney Patients, Tampa, FL, 5Lung Transplant Foundation, Raleigh, NC, 6Donor Alliance, Denver, CO
Meeting: 2020 American Transplant Congress
Abstract number: C-218
Keywords: Cadaveric organs, Ethics, Informed consent, Public policy
Session Information
Session Name: Poster Session C: Non-Organ Specific: Economics & Ethics
Session Type: Poster Session
Date: Saturday, May 30, 2020
Session Time: 3:15pm-4:00pm
Presentation Time: 3:30pm-4:00pm
Location: Virtual
*Purpose: Organ donor intervention research (“intervention research”) aims to increase organ quality and quantity for transplantation by protecting against organ injury and enhancing functionality. Given the debate over how to ethically and logistically implement intervention research into transplant practice, we assessed kidney, liver, heart, and lung transplant candidates’ willingness to accept intervention organs subjected to intervention research (“intervention organs”) and participate in post-transplant intervention research, preferences for research and/or clinical informed consent, and attitudes about intervention research consent policies. Clinical consent pertains to standard of care, research consent pertains to research participation.
*Methods: We conducted an online and paper survey of transplant candidates at two transplant centers or who are members of the American Association of Kidney Patients, National Kidney Foundation of Illinois, and the Lung Transplant Foundation.
*Results: A total of 425 participants completed the survey, representing kidney (79%), liver (10%), lung (6%), and heart (5%) transplant candidates. Mean age was 54 years. Most were male (54%), White (68%), or African American (22%). Half (52%, 216/422) were ‘entirely likely’ or ‘very likely’ to accept an intervention organ and partake in intervention research today. Most (92%, 389/423) ‘strongly’ or ‘slightly’ agreed that all transplant candidates should be informed about the intervention research study before accepting an intervention organ and partaking in intervention research. Most (85%, 305/360) believed that it is ethically necessary for candidates to give research informed consent to accept an intervention organ and partake in intervention research. Most (73%, 279/380) ‘strongly’ or ‘slightly’ agreed that it is necessary for candidates to give both research and clinical informed consent to accept an intervention organ and partake in intervention research. Most preferred giving research informed consent and clinical informed consent (75%, 285/380) than only clinical consent (25%) to accept an intervention organ and partake in intervention research, even though a longer discussion would increase the potential harm to the organ while increasing their knowledge about the organ, the research, and its risks.
*Conclusions: Findings suggest that most candidates prefer research and clinical informed consent to accept intervention organs and partake in intervention research. Given the Revised Common Rule “reasonable person” standard, the transplant system should accommodate candidates’ preferences for research informed consent.
To cite this abstract in AMA style:
Gordon EJ, Abt P, Phillips C, Bermudez F, Knopf B, Lee J, Veatch R, Knight R, Conway PT, Goldstein J, Dunn S, Reese P. Waitlisted Patients’ Preferences for Accepting and Consenting to Transplantation with Experimentally Manipulated Organs [abstract]. Am J Transplant. 2020; 20 (suppl 3). https://atcmeetingabstracts.com/abstract/waitlisted-patients-preferences-for-accepting-and-consenting-to-transplantation-with-experimentally-manipulated-organs/. Accessed November 22, 2024.« Back to 2020 American Transplant Congress