TY - JOUR
T1 - Patient’s Perspectives of Experimental HCV-Positive to HCV-Negative Renal Transplantation
T2 - Report from a Single Site
AU - Van Pilsum Rasmussen, Sarah E.
AU - Seaman, Shanti
AU - Brown, Diane
AU - Desai, Niraj
AU - Sulkowski, Mark
AU - Segev, Dorry L.
AU - Durand, Christine M.
AU - Sugarman, Jeremy
N1 - Publisher Copyright:
© 2019, © 2019 Taylor & Francis Group, LLC.
PY - 2020/1/2
Y1 - 2020/1/2
N2 - Background: With growing transplant wait times, clinical trials are evaluating the safety and efficacy of transplanting HCV-infected donor (HCV+) organs into HCV-noninfected recipients (HCV D+/R-). Such transplants raise ethical questions about safety, consent, and access to organs. Methods: We interviewed eight of the ten total HCV D+/R- transplant recipients enrolled in a pilot clinical trial examining the safety and feasibility of these novel transplants regarding their experiences in the trial, including their decision-making and perceptions of the informed consent process. Results: All interviewees reported positive experiences and expressed confidence regarding their decision to participate. Participants accepted an HCV + organ based on their assessments of the risks and potential benefits of HCV D+/R- transplants. For many, the risks of HCV were minimal compared to the risks of not receiving a transplant. All participants recalled providing informed consent, reporting that the process was thorough and that all their questions were addressed. Participants did not regret receiving an HCV D+/R- transplant and did not report experiencing stigma. However, given their understanding of HCV cure rates in the general population and the survival benefit associated with kidney transplantation, participants may have conflated research regarding HCV D+/R- transplantation with clinical care, suggesting a potential therapeutic misconception. Conclusions: Recipients of experimental HCV D+/R- transplants generally seemed to recognize the risks and benefits of these novel transplants and did not regret participating. Such salutary reported experiences are important in assessing the appropriateness of further research into the feasibility of HCV D+/R- transplants.
AB - Background: With growing transplant wait times, clinical trials are evaluating the safety and efficacy of transplanting HCV-infected donor (HCV+) organs into HCV-noninfected recipients (HCV D+/R-). Such transplants raise ethical questions about safety, consent, and access to organs. Methods: We interviewed eight of the ten total HCV D+/R- transplant recipients enrolled in a pilot clinical trial examining the safety and feasibility of these novel transplants regarding their experiences in the trial, including their decision-making and perceptions of the informed consent process. Results: All interviewees reported positive experiences and expressed confidence regarding their decision to participate. Participants accepted an HCV + organ based on their assessments of the risks and potential benefits of HCV D+/R- transplants. For many, the risks of HCV were minimal compared to the risks of not receiving a transplant. All participants recalled providing informed consent, reporting that the process was thorough and that all their questions were addressed. Participants did not regret receiving an HCV D+/R- transplant and did not report experiencing stigma. However, given their understanding of HCV cure rates in the general population and the survival benefit associated with kidney transplantation, participants may have conflated research regarding HCV D+/R- transplantation with clinical care, suggesting a potential therapeutic misconception. Conclusions: Recipients of experimental HCV D+/R- transplants generally seemed to recognize the risks and benefits of these novel transplants and did not regret participating. Such salutary reported experiences are important in assessing the appropriateness of further research into the feasibility of HCV D+/R- transplants.
KW - Transplantation
KW - hepatitis C
KW - interview
KW - qualitative research
KW - research ethics
UR - http://www.scopus.com/inward/record.url?scp=85074327441&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85074327441&partnerID=8YFLogxK
U2 - 10.1080/23294515.2019.1670277
DO - 10.1080/23294515.2019.1670277
M3 - Article
C2 - 31618112
AN - SCOPUS:85074327441
SN - 2329-4515
VL - 11
SP - 40
EP - 52
JO - AJOB Empirical Bioethics
JF - AJOB Empirical Bioethics
IS - 1
ER -