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Voluntariness in Living-Related Organ Donation

Biller-Andorno, Nikola

doi: 10.1097/TP.0b013e3182279120
Editorials and Perspectives: Overview
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Living organ donation requires hurting one person—at least physically—to help another. This can be morally justifiable if certain ethical criteria are met, among them voluntary and informed consent. In the existing guidance, voluntariness is usually vaguely defined as the absence of coercion. This, however, is not enough as a basis for making well-considered decisions in individual cases. A comprehensive evaluation, procedural safeguards, and critical awareness of potential pitfalls can help establish the voluntariness of the donor's decision.

Institute of Biomedical Ethics, University of Zurich, Switzerland.

The author declares no funding or conflicts of interest.

Address correspondence to: Nikola Biller-Andorno, Prof. Dr. med. Dr. phil., Institute of Biomedical Ethics, University of Zurich, Pestalozzistr. 24, CH-8032 Zurich, Switzerland.

E-mail: biller-andorno@ethik.uzh.ch

Received 23 August 2010. Revision requested 20 October 2010.

Accepted 2 June 2011.

Living organ donors have become an established source of organs for transplantation. A number of medical, logistic, infrastructural, and economic reasons render living organ donation (LD) attractive. Among them are: better outcomes for the recipient when compared with an organ from a deceased donor (1), the opportunity to plan and schedule the operation to reduce warm ischemic time, and what is generally considered an acceptable level of risk and burden for the donor. The risks for kidney donations are considered low (1), with a reported postoperative mortality rate of 0.02% (2) and with no increased longterm risk of end-stage renal disease in carefully screened donors (3). The risks of liver donation are higher, regarding mortality as well as morbidity (4, 5). The immediate medical costs saved in comparison to postmortem donation or continued dialysis—at least from the point of view of the health system—also speak in favor of living donor organ transplantation (6).

Today, LD enjoys a comparatively broad acceptance, both professional and societal. A few decades ago, when immunosuppressants became more powerful and allowed for sustained success of transplants from deceased donors, both policy makers and transplant surgeons questioned the place of LD and whether, in fact, it should continue as a practice (7). This skepticism was due to the moral dilemma inherent in LD, which requires that an individual be submitted to the risk and burden of organ removal to help another for no direct medical benefit for the donor himself or herself.

Today, LD is considered morally justifiable based on the autonomy of the donor (8, 9) if the following conditions are met: The donor is medically and psychosocially suitable and competent. He or she has been fully informed about the risks and benefits to both donors and recipient as well as about alternative treatment available to the recipient (10). Donor risks and benefits need to be balanced with recipient risks and benefits (11), and aggregated benefits must outweigh the risks of donation and transplantation. And finally, the donor needs to be willing to donate and be free from coercion.

This last requirement—willingness to donate and freedom from coercion—has been formulated differently in various statements. The Membership Statement of the Transplantation Society stipulates: “the decision to donate is voluntary, free of exploitation and coercion” (12). The Consensus Statement of the Amsterdam Forum on the Care of the Live Kidney Donor states that “the decision to donate should be voluntary, accompanied by the freedom to withdraw from the donation process at any time” (13), and the Ethics Statement of the Vancouver Forum on the Live Lung, Liver, Pancreas, and Intestine Donor 2 years later added that “the transplant team should make efforts to assure that the decision to donate is voluntary and has not been manipulated” (14).

These different formulations can be taken to flag a certain conceptual and normative tension or vagueness, as to how exactly the voluntariness requirement should be understood. Yet, correctly defining voluntariness is an issue of considerable practical importance, because the question of how the voluntariness of actual donors should be properly evaluated—particularly those who are in a close personal relationship with the potential recipient—is far from settled. Although standards on how to appropriately inform donors and to check their understanding are evolving (cf., e.g., the US Medicare Program [15]), standards for an empirical evaluation of how voluntary a decision to donate is and if it is in fact voluntary enough to satisfy relevant ethical norms are far less developed.

So what does a “voluntary” decision to donate an organ mean? Is it simply the absence of coercion, that is, one person intentionally using “a credible and severe threat to harm or force to control another” (9)? Such a concept would be too narrow, excluding more subtle interference such as persuasion and manipulation (16), which can also lead to perceptions of undue pressure incompatible with voluntary decision making. Understanding voluntary donation as the mere absence of coercion cannot capture the full range of nonvoluntary decisions, especially in living-related donation.

But are decisions to donate ever completely free, particularly in a family context (17, 18)? Donation within families entails that donor and recipient are often intimately related to each other. This means that related donors stand in a very different, emotional relation to the recipient than would unrelated, altruistic donors (19). However, even if emotional and moral commitments exist, these need not necessarily be understood as constraints on freedom. A moral agent should be understood as a relational being and still be conceived as being able to make autonomous choices, as long as the individual is morally mature enough to critically reflect on which needs—their own needs or those of others—they wish to address, and as long as the situational context allows for expressing such choices (8). In fact, a relational model of the autonomous donor—based on the idea that donors make decisions as socially embedded agents—provides a more nuanced picture of the donor. With such a picture in mind, we may be more acutely aware of the potential ethical issues. For example, even within the relatively safe context of the family—as compared to say an international market in organ procurement—one needs to be aware of the problems associated with the “gift” model of donation, such as various family pressures, and expectations, even claims of duties and sacrifice that seem to be naturally tied to family relations, and the possible repercussions of refusing to make such sacrifices (18).

It becomes clear, then, that the psychosocial evaluation needs to address the self-understanding of the potential donor as an autonomous moral agent as well as the web of relationships and contextual factors that might impact on the voluntariness of the donation decision. Although there is little literature on the voluntariness aspect of consent from the perspective of the donor, a few notable issues have been highlighted by various scholars. Fujita et al. describe certain nuances in the consent and motivation of donor in related LD. Although emphasizing that there is little evidence of coercion, they identify three possible motivations of donors: (1) unconditional consent: the consent procedure may fall short of ensuring understanding and voluntariness given their keenness regarding donation, (2) pressured consent: where the donor feels an “implicit pressure from others or internally, from his or her conscience, to donate,” and finally (3) ulterior-motivated consent: the possible relation of donation to psychological reward, for example, in the hope of saving a fragile marriage (20). These explorations illustrate that voluntariness is a complex, multifaceted concept, and its ethical underpinnings refer back to larger, unresolved debates regarding free will and moral agency.

But rather than just relying on a theory-based definition of voluntariness, the search for guidance for judging the moral appropriateness of a live donation can be informed by two other elements, procedural safeguards and critical awareness of potential pitfalls.

Procedural steps can be taken to establish a certain level of safeguard to protect voluntariness in donation, without resorting to paternalistic means. In establishing a sort of checklist for the organ transplant or recruiting team, a key question could be asked: Over the process of informed consent, has the potential donor had ample opportunity to say no? An advantage of using this approach as an indicator for sufficient (if not absolute) voluntariness is that it can easily be translated into a clinical context by the way of procedural safeguards, such as exploring potential donors' willingness in a discrete, noncommittal way (e.g., avoiding offering the option to donate to a relative in the presence of the potential recipient); allowing for a cooling off period after the initial exchange or disclosure (no needless rush in scheduling the operation); establishing contact with an independent donor advocate; and describing mechanisms for opting out, while assuring confidentiality of reasons for withdrawal. A clinical ethicist or an ethics committee might be helpful in integrating voluntariness-enhancing procedural steps into the algorithms that each institution usually develops for itself.

A second strategy for fostering donors' voluntariness is to be aware of situational, group specific, or individual factors that might reduce the degree of voluntariness (for examples of problematic cases, see Biller-Andorno and Schauenburg [21]). These factors are frequently hard to substantiate and to quantify, and accordingly, empirical studies are scarce. Female gender, for instance, may be one such factor, with women being described as volunteering more frequently as live donors while feeling more pressure to donate than men (22, 23). Among other features undermining voluntary choices could be the following: potential donors who do not understand themselves as autonomous moral agents but act as they are expected or urged to do and would never dare to refuse (e.g., women from strongly patriarchal cultures); pressure from the potential recipient or relatives, be it by exhortations, incentives, or other means; societal intolerance of nondonors; and institutional pressure on transplantation departments leading to more aggressive recruitment. To increase awareness of factors that might reduce voluntariness in individual donors, regular case discussions can help, be it during rounds at the transplantation department involving the interdisciplinary transplant team or at conferences with a group of peers. These cases can then be invoked by analogy when other similar cases are being encountered. Again, clinical ethics may be helpful in analyzing and discussing such cases together with the team.

LD can be a commendable option for saving lives or at least enhancing their quality, as long as no other morally less complex options of comparable effectiveness are available. A comprehensive evaluation addressing both the autonomy and the relatedness of the donor, the establishment of procedural safeguards, and an awareness of factors that might reduce voluntariness can help toward protecting those who would actually prefer not to donate but cannot find a way to make their preference known. The existing guidance acknowledges the importance of voluntariness as a moral requirement of live donation and identifies important elements, in particular the absence of coercion and manipulation as well as the risk of exploitation. However, a more systematic and detailed treatment of the issue remains a task for future standards.

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ACKNOWLEDGMENT

The author would like to thank Ms. Agomoni Ganguli-Mitra, M.Sc., for her helpful comments and suggestions.

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Keywords:

Living organ donation; Voluntariness; Consent; Ethics

© 2011 Lippincott Williams & Wilkins, Inc.