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Living Non-Directed Organ Donation

Reviewed and updated December 2015

Categories and Definitions

The two basic types of donation of human organs for transplantation are by deceased donors and living donors. Living organ donations can be either: “directed” (i.e., the organ is intended for an individual named or specified by the living organ donor), or “non-directed” (i.e., the organ is intended for an individual neither named nor specified by the donor). Other terms sometimes applied to living “non-directed” donation include “anonymous,” “unspecified,” “community,” “good Samaritan,” and “altruistic” donations. The first three alternate terms for “non-directed” are neutral and do not connote a comparison to directed donation; but the fourth and last terms connote some greater moral value as compared to directed donation. This paper uses only the term “non-directed” donor and donation (NDD) to avoid implying any comparative value to the donation.

The history of living kidney donation is relevant to the ethics of living non-directed donation. The drive to accept non-directed living organ donation came not from transplant programs or candidates, but rather from potential non-directed donors themselves volunteering to be non-directed donors.1-3 Transplant programs initially did not recruit them, but in recent years non-directed living donor transplants are more commonly accepted, comprising 184 (3.32%) of the 5,536 living donor kidney transplants performed in 2014.4 (During this same year, there were 280 living liver donors including four cases of non-directed living liver donation). However, some programs remain reluctant to accept non-directed living kidney (or liver) donors.

The Organ Procurement and Transplantation Network (OPTN), through its contract with the United Network of Organ Sharing (UNOS), requires transplant centers to report the relationship between the donor and recipient for every organ transplanted. These relationships must be reported through one of 12 categories or subcategories as described in the following table:

Relationships between donors and recipients
Major category Subcategories Relationship
Biological, blood-related 6 Parent, child, identical twin, full sibling, half sibling or other relative
Non-biological 2 Spouse, life partner
Non-biological, unrelated 4 Paired donation, anonymous donation, domino, other unrelated directed

The two subcategories of non-biological, unrelated donors not considered non-directed donors include paired donation and domino donation and are described below:

  • Paired Donation (Kidney) is the donation and receipt of human kidneys under the following circumstances:

    • An individual (the first living donor) desires to make a living donation of a kidney specifically to a particular patient (the first patient), but the first living donor is biologically incompatible as a donor for the first patient.

    • A second individual (the second living donor) desires to make a living donation of a kidney specifically to a second particular patient (the second patient), but the second living donor is biologically incompatible as a donor for the second patient.

    • The first living donor is biologically compatible as a donor of a kidney for the second patient, and the second living donor is biologically compatible as a donor of a kidney for the first patient. If there is any additional donor-patient pair as described above, each living donor in the group of donor-patient pairs is biologically compatible as a living donor of a kidney for a patient in the group.

    • All donors and patients in the group of donor-patient pairs enter into a single agreement to donate and receive the kidneys, respectively, according to biological compatibility within the group.

Other than described as above, no valuable consideration is knowingly acquired, received, or otherwise transferred for the donation of the kidneys

  • Anonymous Donation involves living donors who are not related to or known by the recipient. This type of donation is also referred to as anonymous, or altruistic, non-directed living kidney donation.

  • Domino Donation describes two types (heart and liver) of rare transplant procedures. Domino donors include individuals who are undergoing organ transplantation as treatment for a medical problem and whose organ is suitable for transplant to another transplant candidate. 5,6 Domino donors are typically categorized as non-directed donors but it also might be possible for a domino donor to direct the placement of their donated organ. Historically, the term “domino” may have been used to describe participants in kidney paired donation systems. For the OPTN reporting system, domino donation only applies to individuals who are undergoing organ transplantation as treatment for a medical problem and whose organ is suitable for transplant to another transplant candidate.

Anonymous donation is the only subcategory of non-biological, unrelated donors that is considered living non-directed donation. Anonymous donation involves living donors who are not related to or known by the recipient.

Two key characteristics are common to non-directed donors.

  1. Non-directed donors give their organ to a stranger; they know neither the identity nor (usually) any characteristics of the recipient before their donation. Most transplant programs do not tell non-directed donors anything about the recipient before the donation, and tell the recipient at most, only general characteristics, e.g., if there is a marked age differential. If, after the surgery, either the donor or recipient does not permit the transplant program to give or receive information about the other, both the non-directed donor and recipient may never learn any information about the other person and thus never meet. (Given the widespread use of social media and of articles written about living organ donors and recipients, especially when the donor is unusual – i.e., not family - donors or recipients who refuse to let the transplant program give their contact information to the other party may, nevertheless, reveal enough information about themselves that the other party can identify them.) We recommend that the possibility that the donor and recipient may never know or meet each other should be included in the informed consent process for all non-directed donors. Two components of informed consent are distinct for non-directed donors. One is that the donor may never learn who the recipient is, or how well the recipient is doing, etc. If the recipient chooses to remain anonymous to the donor, some donors may become disappointed to not correspond with the recipient. Additionally, if the donor learns about the recipient, the donor may become disappointed learning about certain personal characteristics of the recipient.7

  2. Non-directed donors initially receive only an indirect benefit from their donation, being self-generated psychological-emotional benefits of helping an unknown person.8-12 At least initially, non-directed donors (Anonymous subcategory) do not receive a tangible benefit as directed donors could from having a member of their family who is in need of a transplanted organ receiving one (e.g., relief from caregiving, extended time with their loved one). The fact that non-directed donors (Anonymous subcategory) do not receive the tangible benefit of helping a family member was one reason why many transplant professionals were intensely skeptical that such donors were psychologically stable, and some remain skeptical.13 The initial indirect benefits received by non-directed donors are similar in kind, however, to those received by blood donors and many monetary donors to charities.1 It is important to point out that potential non-directed donors in a study from the Netherlands, did not fail psychological screening any more than directed donors, had better mental health scores than the general population, and did not develop more mental health problems after donation than did matched non-living-donor controls.14

The data for those 12 categories reported to UNOS help us further understand the nature of non-directed living organ donation in the US. The following OPTN data https://optn.transplant.hrsa.gov include data for non-directed donors, defined as those marked as “Non-Biological, Unrelated: Anonymous Donation.” Transplant programs began identifying living donors as non-directed donors in 2002.

  • KIDNEY: Non-directed donors totaled 1,683 (2.0%) of 82,400 total living kidney donors from January 1, 2002 to June 2015. The percentage of non-directed kidney donations in the period 2010 through June 2015 has been appreciably higher: 3.1% (983) of the 31,631 living kidney donors.

  • LIVER: From January 1, 2002 through June 2015, 43 (1.1%) of 3,833 living liver donors were non-directed. The percentage increased to 1.4% (20 of 1,480) in the years 2010 through June 2015.

  • LUNG: The first living lung donation was performed in 1990. From January 1, 2002 through June 2015, only one living lung donation has been from a non-directed donor, but living lung donation in general has become increasingly rare in the past decade.

  • OTHER, with living organ donors: Data from January 1, 2002-June, 2015 for the following organs showed no non-directed donors: Kidney / Pancreas (6 living donors from January 1, 2002-June, 2015); Pancreas (3 living donors from January 1, 2002-June 2015); Intestine (29 living donors from January 1, 2002-June, 2015); and Heart (1 living donor, a “domino heart-lung donor” from January 1, 2002-June, 2015).

  • OTHER, with no living donors: Heart-Lung had no living donors.

Informed Consent

The informed consent process for all potential living donors should assure that directed and non-directed donors are competent to make treatment decisions (according to each state’s criteria), have been provided with accurate information, comprehend the information, and are free from undue inducement and coercion.

All the following are required by either or both CMS and OPTN rules and regulations for living donation. Recognizing that transplant surgical techniques are continuously evolving, potential living donors must be given accurate and coherent information regarding their risks of morbidity and mortality, and the post-operative and long-term risks, and be informed that some risks may not yet be known. The potential for psychological, financial, and insurance risks must also be disclosed and understood. In addition, transplant programs must disclose realistic information about the transplantation process, including donor evaluation, surgery, and post-operative follow-up care. Because donation outcomes can significantly affect the donor, transplant programs must provide potential donors with current pertinent post-transplant recipient survival and graft survival data, and clinical risks to potential candidates. The informed consent process must assess that potential living donors comprehend the disclosed information.

The transplant center must assess whether the decision to donate is free from undue inducement, coercion, and other undue influence by exploring the reasons for donating and the nature of the relationship, if any, to the transplant candidate.15 This process may actually be less complicated with living non-directed donors than with living directed donors because the potential non-directed donors tend to not experience undue influences that can occur in familial/emotional relationships.16 Therefore, the living non-directed donor’s decision may more likely be a voluntary act.

In non-directed donations and paired exchanges, hospitals are required to keep the identities of donors and recipients confidential in order to comply and OPTN and Federal regulations. Ensuring confidentiality should help allow the potential donor to discontinue the donation process, without pressure or possible coercion. However, some programs performing paired donation transplants may have exerted pressure on potential donors to not back out of the chain or to not donate outside the chain.17 Transplant programs should take steps to avoid such pressure or perceptions of pressure by potential living donors, as well as remind potential donors that they may withdraw from the evaluation process at any time up until the point of surgery.10,18 Additionally, programs should provide potential non-directed donors in particular with an explanation of how organ allocation policies determine the recipient of their organ. Informed consent must reflect autonomous preferences.

Risk/Benefit Analysis

Primum non nocere ("First, do no harm") is one of the most widely recognized principles of medical ethics. Early opponents of living donor transplantation contended that it violated a strict interpretation of this principle. Living donation surgery is an elective procedure for living donors. In living donation, as in other areas of medicine, interpretation of this fundamental precept has evolved. Harm is no longer considered in isolation. The anticipated medical and psychosocial benefit to the recipient is considered in relation to the anticipated harm and potential benefit to the potential living donor, rather than focusing solely on the avoidance of harm to the living donor.

Thus, one of the primary ethical concerns in living donor transplantation is the need to achieve an appropriate balance between risks and potential benefits to living donors. This risk/benefit calculus is complex because it requires deciding if the potential benefits to the recipient and donor justify the risks to the donor and recipient. The recipient enjoys a disproportionate share of the benefits (improved health and life expectancy), while the donor assumes the burden of an invasive surgical procedure and its potential long-term adverse consequences. There are no direct medical benefits to the living donor, but there may be substantial psychosocial benefits, and these benefits vary from person to person, context, and by whether the donation is directed or non-directed.

In directed donor transplantation, because the potential living donor generally knows the recipient as a family relative, friend, or acquaintance, there is an emotional or biological connection between the potential donor and recipient that motivates the potential donor to offer to donate. Thus, the recipient, the donor, and their relationship all may benefit through the living donor transplantation.

Studies show that when the recipient’s health improves through a transplant, the donor may take joy in seeing a loved one or friend improve. Some studies report that donors can benefit from donating by gaining self-esteem after donating. This finding applies to both directed and non-directed donation.11,19

There are also risks specific to directed donors. For example, the donor-recipient relationship may experience new frictions as some donors negotiate new identities and roles.11,19 Studies have shown that spousal donations have resulted in divorce due to changes in roles.20

By contrast, in non-directed donation, the potential living donor does not know the recipient, which may lead the potential donor to consider different benefits and risks to the recipient and donor. In paired non-directed donation, there are 2 recipients of concern: the recipient of the donor’s organ and the donor’s intended recipient who will benefit from the donor’s donation. However, studies show no significant differences between directed and non-directed donors in their demographic profiles, and physical and psychosocial outcomes.21,22

If the donor and recipient are known to each other, the emotional connection between donor and recipient may introduce an element of undue influence or coercion. That same connection may allow the donor to appreciate, gain satisfaction or enjoy the improved health status and quality of life for the recipient after transplant. In living non-directed donation, absent that connection, the donor assumes risk without an obvious or immediate opportunity to share in the recipient's good fortune. However, non-directed donors may perceive other types of psychological and emotional benefits (e.g., self-esteem, religious duty).11,13,23 Thus, the traditional concern about a lack of obvious potential benefit among non-directed donors that has previously raised questions concerning the non-directed donor's motivation, no longer seems applicable to all or most non-directed donors.

Some scholars have raised comparable concerns about coercion by transplant programs among non-directed donors entering into kidney paired donation exchanges.17

Some research has showed that there was no difference in perceived coercion between directed and non-directed donors.24 However, other reports document that some “compatible donor/recipient pairs” who initially agreed to participate in kidney exchanges have felt pressured by the transplant program to wait for the kidney exchange in order to find a compatible donor in spite of their changed desire for the compatible donor or of their changed preferences to donate to the originally intended recipient immediately.18 For ethical reasons, programs should avoid exerting such pressure on, and also the perception of being pressured by, the compatible pair.

Donor Motivation

The ethical issues discussed in the preceding sections are pertinent to both living non-directed donation and living-directed donation. However, discussions of these issues originally assumed that a relationship exists between the donor and candidate. The unique challenge posed by non-directed donation stems from the difficulty by some transplant professionals in understanding a person's motivation to donate an organ to a person unknown to the donor.1-3 When a relationship exists between the donor and candidate, observers more easily appreciate the extent to which the donor is invested in the situation.

Motivation to donate outside the context of such a relationship is more difficult for some transplant clinicians to discern as part of the donor evaluation process. For this reason, offers by non-directed donors are sometimes met with skepticism by transplant providers. One potentially confounding factor is the expectation that a donor's motivation stems from “pure altruism” (i.e., the desire to help another person without expectation of personal gain). The extent to which “altruism” includes psychological self-satisfaction is still debated in ethics and behavioral economics.25-27

Maintaining a strict conceptual standard that “altruism” means absolutely no benefit to the donor, may result in a tendency to downplay the extent to which individuals benefit from the act of donating. Multiple publications over the past twenty-five years have explored the living donor’s decision-making process. Studies have reported that non-directed donation affords non-directed donors the opportunity to improve the life of another human being, personal growth, spiritual benefit, feelings of accomplishment, increased self-esteem, and other beneficial changes in both directed and non-directed donors.8-12

Considerations of donor motivation should acknowledge that living organ donation is morally commendable and ethically sound. Rather than attempting to strictly define acceptable motivations to be a non-directed donor, transplant programs should rule out unacceptable circumstances, as they do with all potential living organ donors. For example, expectations of financial compensation, or the desire for recognition or attention, or the desire to form an inappropriate emotional bond with the potential recipient, would comprise unacceptable motivations to proceed with surgery. In addition, emotional or intellectual instability or developmental delays may impede the individual’s ability to make an informed decision about donation, and that might be cause for a transplant team to refuse an offer from a non-directed as well as directed donor. Most importantly, the evaluation process should be collaborative between the potential donor and the transplant center to ensure that the donor's goals and expectations are realistic.

Transplant programs need to respond to inquiries about living non-directed donation according to protocols and policies to ensure that inquiries are handled in an objective, standardized, and thoughtful manner. Such offers should not be dismissed simply because they do not conform to the accepted explanation of why people are living non-directed donors. Offers of non-directed donation warrant serious consideration and a commitment on the part of transplant programs to implement policies that would serve the best interests of the donor, candidate, and transplant community.

Anonymity

Non-directed living donor organs are donated with the understanding that, in most cases, the organ recovery center controls the recipient selection process. The recipient should not receive information about the donor. Both donors and recipients understand that the donation process must be anonymous.

If a living non-directed donor and the recipient are in the same center, care should be taken to limit the chance of disclosure of the candidate’s identity. Centers should identify plans to maintain anonymity around vulnerable times of surgery and appointments. Even when these plans are in place, maintaining anonymity is challenging and cannot be guaranteed.

If a non-directed donor or the recipient wish to break anonymity, hospitals should consider all applicable rules or regulations and available guidance on exchanging information between non-directed donors and recipients.

Transplant Program Considerations

A significant number of transplant centers have reported performing non-directed donor transplants with regularity. Therefore, various approaches dealing with non-directed donation are already operational and the practices at these centers must be taken into consideration. Such transplant centers should not exploit the donor and/or the candidate for the private, monetary, or other personal motives of the center or its practitioners. Program marketing, advertising, or the use of media appeals must be based on increasing successful transplants while maintaining safety for donors, and otherwise follow strict standards to prevent the perception of conflicts of interest.

Allocation Considerations

When allocating living non-directed organs to the waiting list, it is important that there be a commitment to serve the entire transplant candidate pool. Allocation of organs recovered from living non-directed donors should follow the standardized policies of non-discrimination utilized for the allocation of deceased donor organs, which recognizes the option for individuals to direct donation in some cases. Since the potential good from non-directed living donation should be maximized, the transplant community should make an effort to match donors and candidates appropriately. For non-directed donations to the waiting list, the organs should be allocated to the first compatible transplant candidate on the list as per the existing OPTN allocation policies, within both clinical and logistical limits.

Donor Follow-up

Donor follow-up is integral to safety of the donor and the success of any living non-directed donor program. Follow-up cannot be imposed on a donor, but every effort should be made to secure a donor’s agreement to regular follow-up, for the sake of their own health, and for the benefit of future living donors. For those reasons, the current reporting requirements for living donor follow-up must be followed.

Conclusions

We believe that in most cases, living non-directed donation is an ethically justifiable form of organ donation, so long as:

  • A strict standard of informed consent that incorporates information disclosure specific to the non-directed donor is followed;
  • The competent potential donor undergoes appropriate medical, psychosocial, and ethical evaluation and screening;
  • Donors are protected from undue influence and coercion;
  • Respect is given to the individual's autonomous decisions while minimizing her/his exposure to risk;
  • Benefits outweigh the risks to the potential donor by donating, regardless of the kinds of benefits to be differentially gained by the non-directed donor compared to the directed donor;
  • Safeguards are followed to assure anonymity between the potential donor and the candidate unless both agree to contact each other;
  • Organs are allocated in an equitable manner according to existing policies.

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