Donor Autonomy Research Articles

Non-Maleficence toward Young Kidney Donors: A Call for Stronger Ethical Standards and Associated Factors in Multidisciplinary Nephrology Teams.

The rising frequency of live kidney donations is accompanied by growing ethical concerns as to donor autonomy, the comprehensiveness of disclosure, and donors' understanding of long-term consequences. To explore donors' satisfaction with the ethical competence of multi-professional nephrology teams regarding disclosure of donation consequences to live kidney donors. A cross-sectional study was performed among Israeli live kidney donors who had donated a kidney in two hospitals that belonged to the Ministry of Health's Transplantation Center one year after the donation, from December 2018 to December 2020. Data collection was conducted online and through face-to-face interviews with the donors in their native language (Hebrew or Arabic). Overall, 91 live kidney donors aged 18-49 years were enrolled. Of those, 65.9% were males, and 54.9% were academic donors. Among the live kidney donors, 59.3% reported that the motivation behind the donation was a first-degree family member vs. 35.2% altruistic and 5.5% commercial. Only 13.2% reported that the provided disclosure adequately explained the possible consequences of living with a single kidney. Approximately 20% of the participants reported that the disclosure included information regarding their risk of developing ESRD, hypertension, and proteinuria. The donors reported a low mean of the index score that indicates a low follow-up by the physician after the donation (mean = 1.16, SD = 0.37). The mean GFR level was significantly lower in the post-donation period one year following a kidney donation (117.8 mL/min/1.73 m2) compared with the pre-donation period (84.0 mL/min/1.73 m2), p < 0.001. Our findings display that donors' satisfaction with the ethical competence of multi-professional nephrology teams regarding the disclosure of donation consequences to live kidney donors is low. This study indicates that donors are at an increased risk of worsening kidney functions (creatinine and GFR), and BMI. Our findings underscore the imperative to advise donors that their condition may worsen over time and can result in complications; thus, they should be monitored during short and long-term follow-up periods. This study was not registered.

Retransplantation in Living Donor Liver Transplantation.

The need for retransplantation after living donor liver transplantation can occur early, mainly because of technical difficulties such as hepatic artery thrombosis or as a result of early allograft dysfunction as a symptom of small-for-size syndrome. Patients with autoimmune diseases may develop progressive graft failure from recurrent disease. The ethics of retransplantation can be complicated by the cause of the initial liver disease, which may be self-inflicted or the outcome of malignancy. This is especially true in countries without the availability of deceased donors for salvage, and a second living donor would be needed. Nevertheless, patients who experience early or late graft failure should be considered for retransplant if they are deemed acceptable candidates. When a living donor is required for retransplant, the equipoise between donor risk and autonomy and recipient outcome should be considered.

Autonomy to a fault: The confluence of organ donation, euthanasia, and the dead donor rule.

Five countries now permit organ donation after euthanasia, on the basis of respecting donor autonomy. Some now openly consider performing euthanasia itself via organ extraction to better preserve organ viability, albeit in violation of the dead donor rule. Proponents argue that respect for patient autonomy requires this option; the dead donor rule is inapplicable since it fulfills donors' wishes. Other ethical arguments, not addressed herein, explore issues including dying at home, impact on clinicians, and societal faith in donation enterprise, but these concerns are not insurmountable. This paper instead solely critiques proponents' oversimplified understanding of autonomy with an autonomy-based argument against any linkage of organ donation and euthanasia, regardless of its timing. Respect for patient autonomy does not unilaterally require fulfilling patients' every wish. Moreover, the very possibility of organ donation with euthanasia limits donor autonomy qualitatively and quantitatively substantially more than by offering it. In fact, organ donation after euthanasia violates the purpose of the dead donor rule, even if not its technicalities.

Organoid biobanking, autonomy and the limits of consent.

In the debates regarding the ethics of human organoid biobanking, the locus of donor autonomy has been identified in processes of consent. The problem is that, by focusing on consent, biobanking processes preclude adequate engagement with donor autonomy because they are unable to adequately recognize or respond to factors that determine authentic choice. This is particularly problematic in biobanking contexts associated with organoid research or the clinical application of organoids because, given the probability of unforeseen and varying purposes for which a donor's organoids could be employed and given the different ways in which a donor can relate to her biospecimens, a donor can value her organoids differently in different contexts, and her reasons for autonomously permitting use of her cells and tissues in one case may not support an autonomous decision in another. In response, this paper has three aims: first, to make the case for why organoid biobanks ought to respect donor autonomy conceived as authentic choice; second, to explore the autonomy‐respecting limits of established and widely prevalent models of biobank consent; and third, to propose certain conditions that organoid biobanks ought to support or facilitate in order to respect donor autonomy.

Donor Autonomy and Self-Sacrifice in Living Organ Donation: An Ethical Legal and Psychological Aspects of Transplantation (ELPAT) View.

Clinical teams understandably wish to minimise risks to living kidney donors undergoing surgery, but are often faced with uncertainty about the extent of risk, or donors who wish to proceed despite those risks. Here we explore how these difficult decisions may be approached and consider the conflicts between autonomy and paternalism, the place of self-sacrifice and consideration of risks and benefits. Donor autonomy should be considered as in the context of the depth and strength of feeling, understanding risk and competing influences. Discussion of risks could be improved by using absolute risk, supra-regional MDMs and including the risks to the clinical team as well as the donor. The psychological effects on the donor of poor outcomes for the untransplanted recipient should also be taken into account. There is a lack of detailed data on the risks to the donor who has significant co-morbidities.

Ethical challenges in vascularized composite allotransplantation of the lower extremity: lessons learned from hand transplantation and implications for the future

Vascularized composite allotransplantation (VCA) is a novel surgical practice that involves the transplantation of multiple tissue types as a functional unit without the primary purpose of extending life. While VCA of the upper extremity is becoming increasingly accepted and performed, VCA of the lower extremity remains largely unexplored despite its acknowledged potential value. There are inherent ethical concerns surrounding VCA that are dominated by a conflict between the principles of beneficence and maleficence. The primary question is whether the quality-of-life benefits to the patient outweigh the risks associated with long-term immunosuppression for a non-lifesaving procedure. In addition, the ethical conversation involves concerns regarding informed consent, donor autonomy, patient privacy and public disclosure, patient selection, and unique considerations in the pediatric patient. Lower extremity VCA has additional ethical issues compared to upper extremity VCA, as current lower limb prostheses provide excellent, near baseline function that upper limb constructs have not yet been able to achieve. In this review, we discuss the ethical challenges of lower extremity VCA using available evidence for the upper extremity. We also compare ethical considerations of VCA of the extremity with other surgical alternatives to limb loss - namely, limb salvage and replantation - and address how the conversation may be altered with further advancements in immunosuppression and prosthetic technology.

Uterus transplantation: ethical considerations.

Uterus transplantation (Utx) offers women with absolute uterine factor infertility the opportunity to carry their own pregnancies. As Utx transitions from an experimental to standard clinical procedure, we review the status of the ethical issues applicable to the stakeholders involved. With more than 65 Utx procedures reported to date, evidence is accruing that enables the chance of success - a live birth - for the recipient to be weighed against the risks the recipient incurs through the Utx process, as well as risks to living donors undergoing surgery, to children exposed in utero to immunosuppressants and the uterine graft environment, and to third parties related to uterus procurement from multiorgan deceased donors. Experience has also informed aspects of recipient and donor autonomy that must be safeguarded. Clinical trial results provides a basis for weighing the interests of the stakeholders implicated in Utx, and so can inform transplant centers' and regulatory bodies' development of policies and protocols that will determine access to Utx and allocation of organs, together with other considerations of justice. Additional evidence, particularly on long-term outcomes, is needed, and new questions can be expected to arise as access to and indications for Utx broaden.

Integrating APOL1 Kidney-risk Variant Testing in Live Kidney Donor Evaluation: An Expert Panel Opinion.

Integrating APOL1 Kidney-risk Variant Testing in Live Kidney Donor Evaluation: An Expert Panel Opinion.

Results from the blood donor competence, autonomy, and relatedness enhancement (blood donor CARE) randomized trial.

This study aimed to promote competence, autonomy, and relatedness among first-time whole blood donors to enhance intrinsic motivation and increase retention. Using a full factorial design, first-time donors (N=2002) were randomly assigned to a no-treatment control condition or to one of seven intervention conditions designed to promote donation competence, autonomy, relatedness, a combination of two (e.g., competence and autonomy), or all three constructs. Participants completed donor motivation measures before the intervention and 6 weeks later, and subsequent donation attempts were assessed for 1 year. There was no significant group difference in the frequency of donation attempts or in the number of days to return. Significant effects of group were observed for 10 of the 12 motivation measures, although follow-up analyses revealed significant differences from the control group were restricted to interventions that included an autonomy component. Path analyses confirmed direct associations between interventions involving autonomy and donor motivation, and indirect mediation of donation attempts via stronger donation intentions and lower donation anxiety. Among young, first-time, whole blood donors, brief interventions that include support for donor autonomy were associated with direct effects on donor motivation and indirect, but small, effects on subsequent donation behavior.

Moral Distress: Its Manifestations in Healthy Donors during Peripheral Blood Hematopoietic Stem Cell Harvesting

Hematopoietic stem cell donors (HSCDs) may have ambivalent feelings about donation. These feelings are related to moral obligation to help a sick relative and/or fear about the donation procedure. This ambivalence can produce moral distress (MD) and anxiety, which are usually unnoticed by the treating physician. The aim of this study was to evaluate the incidence of MD and anxiety in a group of related HSCDs for allogeneic transplantation. In this prospective observational study, to assess MD and anxiety, we applied 3 self-answered questionnaires-a questionnaire developed to assess MD (MDQ), State Trait Anxiety Index (STAI), and Edmonton Symptom Assessment System (ESAS)-before, during, and after hematopoietic stem cell donation. A total of 60 consecutive related HSCDs with a mean age of 38.2 years were included. Thirty-six were male. Hematopoietic stem cell collections were done by apheresis, performed as an outpatient process in all cases. The incidence of MD during the donation process was 56%. The proportion of HSCDs with moderate to high state anxiety decreased significantly from before donation (63%) to after donation (30%). Higher scores for MD correlated with higher scores on the STAI questionnaire (r=0.448; P < .005). Thirty-seven donors (62%) had at least 1 physical symptom even before the stem cell mobilization process started, mainly anxiety (33%), difficulty sleeping (33%), and fatigue (30%). The number of symptomatic donors increased during donation (100%) and decreased after the procedure (80%). We conclude that MD and anxiety symptoms experienced by HSCDs are very common and can be explained by mixed feelings about the donation process. Providing comprehensive psychological support before starting the donation process and guaranteeing respect for the donor's autonomy are needed to decrease the negative impact of the donation experience.

Can we know if donor trust expires? About trust relationships and time in the context of open consent for future data use

As donor trust legitimises research, trust is vital for research in the fields of biomedicine, genetics, translational medicine and personalised medicine. For parts of the donor community, the consent signature...

Remapping the organ donation ethical climate: a care ethics consideration.

Organ donation has gained much attention as the need for transplant exceeds the supply of organs. Various proposals have been put forward to address the organ shortage challenge, ranging from offering incentives to donors, addressing family refusals to donations and instituting presumed consent laws. Presumed consent as the favoured approach has not been universally effective in increasing actual transplants despite its appeal. Few considerations have been given to the broader ethical climate influencing the organ donation debate. This paper examines the ethical climate surrounding organ donation and identifies the challenges existing within such environments. It explores care ethics and its application to the donation system, demonstrating how it can influence the organ donation phases. The conclusion drawn from the analysis is that a caring ethical climate in the pre, during and post-transplant system respects donor autonomy, addresses family reluctance to agree to donation, facilitates the needs of the donee and creates an environment that promotes non-maleficence for all stakeholders.

The unique moral permissibility of uncontrolled lung donation after circulatory death.

Implementing uncontrolled donation after circulatory determination of death (uDCDD) in the United States could markedly improve supply of donor lungs for patients in need of transplants. Evidence from US pilot programs suggests families support uDCDD, but only if they are asked permission for using invasive organ preservation procedures prior to initiation. However, non-invasive strategies that confine oxygenation to lungs may be applicable to the overwhelming majority of potential uDCDD donors that have airway devices in place as part of standard resuscitation. We propose an ethical framework for lung uDCDD by: (a) initiating post mortem preservation without requiring prior permission to protect the opportunity for donation until an authorized party can be found; (b) using non-invasive strategies that confine oxygenation to lungs; and (c) maintaining strict separation between the healthcare team and the organ preservation team. Attempting uDCDD in this way has great potential to obtain more transplantable lungs while respecting donor autonomy and family wishes, securing public support, and enabling authorized persons to affirm or cease preservation decisions without requiring evidence of prior organ donation intent. It ensures prioritization of life-saving, the opportunity to allow willing donors to donate, and respect for bodily integrity while adhering to current ethical norms.

Reassessing the risk of kidney organ donation: Researchers are taking a closer look at the long-term health risks that living kidney donors may face to refine the informed consent process and improve follow-up care.

Reassessing the risk of kidney organ donation: Researchers are taking a closer look at the long-term health risks that living kidney donors may face to refine the informed consent process and improve follow-up care.

Ethical dilemmas related to living donor liver transplantation in Asia

Living donor liver transplantation (LDLT) has evolved rapidly in Asia with good outcomes for both donor and recipient. Nonetheless, LDLT remains a highly demanding technique and complex surgery. The potential risks to the donors provide the basis for many of the ethical dilemmas associated with LDLT. The transplant team must have a good knowledge of the principles of bioethics in order to handle these matters. To look after the need, donor's safety and the chance for good recipient outcomes, the principles of respect for the donor's autonomy, beneficence, and non-maleficence should be practiced. In accordance with the concept of equipoise, the risk to the donor must balance the benefit to the recipient. The transplant center should have adequate experience and proven expertise in LDLT. There are concerns regarding the validity of informed consent given by the donor. While donations to non-relative patients may, at first sight, indicate radical altruism, it is important to apply careful scrutiny. Though organ trading is strictly prohibited by the law, there seems to be an inherent risk with directed donations to strangers. Transplant tourism has flourished in some countries in spite of the existence of strict laws. There are reservations regarding transplantation done by foreign visiting teams. Donor websites facilitating patients and donors and Facebook pages bear no responsibility for the outcomes of their matches and cannot ensure sufficient and accurate information about donation, transplantation, and post-operation life. Telemedicine and virtual consultations appeared to work better when the clinician and the patient know and trust each other.

Clinicians' attitudes and approaches to evaluating the potential living kidney donor-recipient relationship: An interview study.

Careful assessment of the potential donor-recipient relationship is recommended by guidelines to prevent undue coercion, and to ensure realistic expectations and genuine motivations. However, relationships are complex, nuanced and value-laden, and can be challenging to evaluate in living kidney donation. We aimed to describe the attitudes and approaches of transplant clinicians towards assessing the relationship between potential living kidney donors and their recipients. Semi-structured interviews were conducted with 54 transplant clinicians (nephrologists, surgeons, coordinators, social workers, psychiatrists and psychologists) from 32 transplant centres across nine countries including Australia, United States, Canada and New Zealand. Transcripts were analyzed thematically. Four themes were identified: protecting against vulnerability and premature decisions (ensuring genuine motivation, uncovering precarious dynamics and pre-empting conflict, shared accountability, relying on specialty psychosocial expertise, trusting intimate bonds, tempering emotional impulsivity); safeguarding against coercion (discerning power imbalance, justified inquiry, awareness of impression management); minimizing potential threat to relationships (preserving the bond, giving equitable attention to donors and recipients, ensuring realistic expectations); and ambiguities in making judgments (adjudicating appropriateness and authenticity of relationships, questioning professional intervening, uncertainties in subjective and emotional assessments). Clinicians felt ethically compelled to minimize the risk of undue coercion and to protect donors and recipients when evaluating the donor-recipient relationship. However, disentangling voluntariness and altruism from potential undisclosed pressures to enact societal and family duty, making decisions within this complex, multi-stakeholder context, and avoiding the imposition of undue paternalism and donor autonomy, were challenging. Multidisciplinary expertise and practical strategies for managing uncertainties are required.

Influencing relatives to respect donor autonomy: Should we nudge families to consent to organ donation?

Refusing consent to organ donation remains unacceptably high, and improving consent rates from family or next-of-kin is an important step to procuring more organs for solid organ transplantation in countries where this approval is sought. We have thus far failed to translate fully our limited understanding of why families refuse permission into successful strategies targeting consent in the setting of deceased organ donation, primarily because our interventions fail to target underlying cognitive obstacles. Novel interventions to overcome these hurdles, incorporating an understanding of cognitive psychology and behavioral change therapy, may be beneficial. One potential intervention is to use the concept of nudge theory, where decision-making is influenced by encouraging positive reinforcement and indirect suggestion. Purposefully nudging families to given consent for organ donation by understanding, and then overcoming, their inherent cognitive biases is novel but also controversial. This article explores the roles of relatives in decisions about organ donation, how nudge theory translates to organ donation and discusses the arguments for and against its application.

Donation decisions after death: The case for a family veto

This paper argues that families should be able to refuse to donate the organs of their deceased relative, even when their relative was registered as an organ donor. Families generally hold important relational claims on the body of a decedent, claims which should be respected in the form of allowing families to “veto” postmortem organ donation. Current arguments for and against a “family veto” will first be addressed in order to demonstrate their insufficiency. Typical claims against a family veto either are overly utilitarian, or they appeal to the donor's autonomy and face the problem of explaining why informed consent should be respected after death. I offer a new approach for this issue, which considers relational autonomy and embodied relationships. Thus, I conclude that organ donation decisions should be balanced between the potential donor and their family in a double-veto system. Ce texte montre que des familles peuvent refuser le don d’organe de leurs défunts, même si ce dernier avait fait part de sa volonté expresse. Les familles, en général, réclament le corps de leur décédé et ce droit de réclamation devrait permettre aux familles de s’opposer à une donation d’organes postmortem. Les arguments pour ou contre ce veto des familles seront exposés dans un premier temps pour montrer leurs insuffisances. Les oppositions à un veto familial sont utilitaristes, font appel à l’autonomie du donneur et mettent en avant que le consentement éclairé doive être respecté après la mort. J’offre une nouvelle approche qui considère l’autonomie relationnelle et l’incarnation. Je conclue que les décisions de dons d’organes doivent être mises en balance entre le donneur potentiel et le veto familial par un système de double-veto.

From Directed Donation to Kidney Sale: Does the Argument Hold Up?

The UCLA Medical Center has initiated a "voucher program" under which a person who donated a kidney would receive a voucher that she could provide to someone of her choosing who could then use it to move to the top of the renal transplantation waiting list. If the use of such vouchers as incentives for donors is morally permissible, then cash payments for kidneys are also morally permissible. But, that argument faces five objections. First, there are some goods whose nature allows them to be exchanged for similar goods but renders them monetarily inalienable. Hence, kidneys might be exchanged for kidneys but not sold for cash. Second, voucher programs respect donor autonomy, whereas the offer of cash payments does not. Third, the burden of proof lies with the advocates of cash payments for kidneys to show that their benefits would outweigh the costs of their legalization. Fourth, allowing cash payments for kidneys would stifle medical innovation. Fifth, allowing cash payments for kidneys would result in these organs being used as collateral to secure loans-and that this would disadvantage potential borrowers who did not want to risk their kidneys in this way. This paper will rebut all these objections.

Opting out: a single-centre pilot study assessing the reasons for and the psychosocial impact of withdrawing from living kidney donor evaluation

Understanding why individuals opt out of living donation is crucial to enhancing protections for all living donors and to identify modifiable barriers to donation. We developed an ethical approach to...