Altruistic Kidney Donation: Overview and Ethical Considerations

Abstract

End-stage kidney disease is a global pandemic which exerts significant morbidity, mortality as well as economic burden on affected patients. Kidney transplantation, either from cadaveric or living donors, offers the best therapeutic choice to improve survival and quality of life. However, due to the increasing prevalence of end-stage kidney disease, there is a great mismatch between the demand and supply of donor organs. Efforts to mitigate this dire shortage include altruistic organ donations. Altruistic donation refers to organ donation by an individual who is neither genetically nor emotionally related to the potential recipient. This concept at its inception received a lot of resistance from the transplant community and continues to raise ethical concerns. This chapter reviews altruistic organ donation, ethical considerations and its potential benefits.

1. Introduction

End-stage kidney disease (ESKD) is associated with life-threatening complications which have significant adverse impact on both the affected individual and the health-care system [1]. Kidney transplantation remains the favored therapeutic option for improving survival and quality of life, and reducing morbidity in patients with ESKD [1]. Transplantation can be either from deceased donors or living donors [1].

Living kidney donor transplantation, which can either be directed (related) or non-directed (unrelated), has been demonstrated to have superior recipient and graft outcomes compared to cadaveric donation [2]. In addition, living kidney donors form an important link filling the gap of significant donor organ shortage that leads to prolonged waitlist times. In 2014, according to data from the Organ Procurement Transplantation Network (OPTN), over 4000 individuals on the waitlist died while waiting for a kidney transplantation while an additional 3668 became unfit for the rigors of transplantation. Similarly, the United States Renal Data System estimates that the average waitlist time is 3.6 years [3, 4, 5].

Altruistic donation, a form of living kidney donation, has been referred to by many terms in literature including: non-directed donation (American terminology), unspecified donation (European), Good Samaritan donation and anonymous donation [6, 7]. It is a fairly recent development which is rapidly gaining popularity in these times [6, 7, 8]. According to the Cambridge English Dictionary, altruism can be defined as the “willingness to do things that bring advantages to others, even if it results in disadvantage for yourself” [9]. In transplant medicine, altruistic donors are donors who are neither genetically nor emotionally related to the potential transplant recipients i.e. donation to a virtual stranger [7, 10, 11]. This definition, which implies no obvious benefits to the donor, is perhaps one of the reasons why much skepticism abounds about this form of organ donation [6, 7]. The road to altruistic organ donation has been paved with many stumbling stones borne from scandals and individual reluctance of transplant surgeons and community non-acceptance [6, 7, 8].

2. History of living kidney donation and altruistic donation

Living kidney donation has been in existence for almost seven decades, since an identical twin donated to his brother in 1954 at the Peter Brent Brigham hospital in Boston; it has progressively increased in practice following immense strides in surgical techniques and immunosuppressive therapy [12]. It now accounts for up to one-third of transplants in both the United Kingdom (UK) and United States (US) and the entirety of transplants in many African and Middle-Eastern countries [6, 7].

The first report of altruistic kidney donation occurred in the US in the seventies when Sadler et al., reported a series of 30 living unrelated kidney transplant recipients [13]. However, interest in this practice waned due to the relatively low success rates of transplantation from genetically unrelated donors at this time [13]. This was coupled with a number scandals in the eighties involving commercial organ procurement and transplant tourism; this sparked ethical debates and led to the advent of the National Organ Transplant Act (NOTA) in 1984 which expressly prohibited the purchase of donor organs [8, 14, 15, 16]. However, at the turn of the millennium, there was a resurgence in altruistic donation when Matas et al. reported success with 22 kidney transplant recipients [17]. Since then, it has progressively gained popularity, with over 3900 altruistic donations taking place in the US from 2001 till date (representing >2% of all living kidney donations) and this number is expected to increase [5, 10, 18]. In fact, according to data from the Organ Procurement and Transplantation Network, an all-time high record of 476 anonymous kidney donors was reported in 2021 and another 194 by June 2022 (Figure 1) [18].

Figure 1.

Bar chart depicting the number of living non-biological unrelated anonymous donations per year in the US. Bar chart based on data culled from: Donor: Living donor relation to recipient by donation year. Organ procurement and transplantation network [internet]. Available from: http://www.optn.transplant.hrsa.gov. [accessed: 2022-2107-31].

In the UK, the Human Organ Transplant Act of 1989 criminalized transplantation in genetically unrelated donor-recipient pairs unless they were formally approved by the Unrelated Live Transplantation Regulatory Authority and altruistic donation was discouraged [11]. However, the Human Tissue Act and Human Tissue Authority, which came into legislation in 2004 and 2006 respectively, enabled altruistic kidney donation to commence; similar to the US experience, its incidence has increased, with majority of transplant centres partaking, and now accounting for 80 to 110 transplants per year [6, 11, 14]. Altruistic kidney donation now takes place in several countries including US, UK, Netherlands, Canada, Australia, Sweden and Spain, with the majority occurring in the former three regions [7]. Figure 2 is a bar chart depicting the increasing incidence of altruistic kidney donation in the UK [6].

Figure 2.

Bar chart depicting the number of unspecified kidney donations (UKD) occurring per year in the UK. Source: [6].

3. Altruistic kidney donation

The premise of altruistic kidney donation has raised a lot of questions such as “What is the driving force behind altruistic organ donation?” and “What does the altruistic organ donor gain from such an endeavour?” [19]. However, since it is a viable source of kidney allograft, the transplant physician should be conversant with the factors that limit its acceptance and the guidelines and ethical considerations pertaining to its practice. These issues will be addressed in the following sub-sections:

3.1 Characteristics of the altruistic donor

In literature, the description of the altruistic donor is non-specific; however, in the study by Kumar et al., it was reported that altruistic donors were more likely to be females and Caucasian in origin [20]. In other studies, they were also predominantly Caucasian, older (averagely 10 years older than directed donors), retirees with religious inclinations and often had previous surgical procedures [6, 21]. They also tended not to have active dependents and were more involved in other altruistic endeavors such as volunteerism, blood donation, monetary charity, etc [6, 20, 21].

3.2 Motives of the altruistic donor

This has been the source of many debates in the transplant community. Without apparent direct benefits and with added potential surgical risks, what drives the altruistic donor? [19, 22]. It is therefore understandable that many transplant physicians regard this altruism with skepticism and shun the practice. Studies have shown that the primary motivation for altruistic donation arises from a pressing desire to be of help, a strong sense of empathy and the inclination that the benefits to the recipient outweigh the personal risks incurred. Many of these donors have a heightened sense of moral obligation, but secondary gains such as time off work, media attention or popularity may be additional inciting factors [6, 7, 22, 23]. Since most of these individuals are often already involved in other altruistic endeavors, it is not far-fetched if extended to living organ donation.

3.3 Guidelines for altruistic kidney donation

There are no standardized, globally-accepted guidelines or policies underlying the process of altruistic kidney donation [8, 10, 16, 24]. Regardless of individual transplant centre practices, any proposed guideline on altruistic donation should include the following core tenets:

• Mitigation of risks to the altruistic donor: This requires a rigorous and unbiased pre-donation evaluation process [8, 24].

• Avoidance of financial compensation: Financial compensation can be construed as undue inducement or coercion and still remains illegal in many countries [14, 15, 24].

• Maintenance of anonymity of the recipient-donor pair: Though difficult to attain, this protects the recipient from potential exploitation and an unrealistic sense of obligation, while protecting the donor from breach of privacy, anxiety about transplant outcomes, donation pressure and undue attention from the recipient, preserving the altruism of the act [23, 25]. To preserve anonymity, the University of Minnesota proposed registering the donors under aliases and admitting recipients and donors in different hospital wings; however, these measures are not infallible [3, 6, 24, 25]. Most countries insist on total anonymity for altruistic donation and this remains lifelong in Netherlands and Sweden; however, the UK recently revoked this, allowing anonymity to be lifted 6 months after donation on request from both parties [3].

• Minimizing potential conflicts of interest in transplant programs: Conflicts of interest may arise when transplant programs involved in altruistic kidney donation are responsible for sourcing and allocating these organs to patients on their own waitlists. This may foster competitive pressure to improve performance at the expense of appropriate donor assessment [6, 14, 24].

3.3.1 Evaluation of the altruistic donor

Evaluation of the altruistic kidney donor often follows the same steps as the established process for living kidney donors with emphasis placed on additional psychological assessment by an independent certified psychiatrist/psychologist. Although the latter is no longer mandatory in the UK, it still remains standard practice [6, 8]. In the US, Crowley et al. [24] demonstrated in an analysis of 50 high-performance transplant centres and organ procurement organizations (OPO) that screening of the altruistic donor often follows five or six main steps:

1. A baseline screening interview: This often takes place over the phone between the intended altruistic donor and transplant physician. This provides preliminary medical history that can immediately rule out organ donation and ascertain the motives of the donor and his/her knowledge regarding the donation process [16, 24]. Figure 3 below summarizes a proforma for this initial screening [16].

2. Provision of a comprehensive educational brochure to the altruistic donor.

3. In-person review: This is performed by the transplant physician and/or other team members and includes complete clinical history, physical examination, laboratory evaluation and obtaining informed consent.

4. Psychosocial evaluation: This is conducted by independent assessors including a behavioral scientist and/or a panel from the centre’s transplant committee. This serves to protect the donor and ascertain his mental health. Some centres give a lag period after this assessment to allow the potential donor come to terms with his/her decision.

5. Donor nephrectomy and organ allocation: Allocation is done according to United Network for Organ Sharing and/or centre-specific clinical criteria in most centres while others use OPOs to facilitate organ distribution similar to cadaveric organs.

6. Post-donation review and monitoring: This follows the standard for living kidney donors but may not be ideal due to the peculiarities of this type of donor [7, 8, 10, 16, 20].

Figure 3.

Proforma depicting standard questions asked during the baseline interview between the altruistic donor and transplant Centre. Source: [16].

3.3.2 Models for altruistic kidney donation programs

Potential altruistic donors may influence how their organs are utilized. There are currently 2 models for altruistic donation programs [8, 11]:

1. The donor organ may be included directly into the national transplant waitlist as previously done in most countries [8, 11].

2. Altruistic donations may be utilized in kidney sharing schemes, a more recent model that maximizes the number of transplantations. Kidney sharing schemes can be paired donations or pooled altruistic donor chains involving more than a pair of recipients. These schemes can occur simultaneously (so-called domino donation chains) or not (non-simultaneous extended altruistic donor chains) [8, 11]. Unfortunately, it may be time-consuming, involve a lot of logistics and increase the waitlist time for vulnerable recipients like the highly-sensitized one [8, 24]. Figure 4 summarizes these models while Figure 5 illustrates a kidney donation chain with the altruistic donor as the starting point [8, 11].

Figure 4.

Summary of altruistic donation models. D: Donor; R: Recipient. Source: [8].

Figure 5.

Illustration of a pooled donation scheme with the altruistic donor at the fore-front. Source: [11].

3.4 Outcomes of altruistic kidney donation

There have been concerns about the outcomes, especially psychosocial, of altruistic donors [6, 7, 8, 10]. In a comparative study of the post-donation outcomes of altruistic donors versus directed donors over a 5-year period in the UK, Maple et al. reported no significant differences between the two cohorts across several psychosocial domains [6]. Furthermore, there were no differences in terms of post-operative outcomes such as duration of hospital stay, complication rates, incidence of hypertension and abnormal laboratory parameters [6]. However, the altruistic donors recovered faster post-operatively and returned earlier to their routine activities such as work (4–6 weeks vs 6–12 weeks, p < 0.001) and driving (<4 weeks vs 6–12 weeks, p < 0.001) [6]. This same study also assessed regret amongst the donors and found no significant differences in the degree of current or future regrets about organ donation [6]. Several small studies have reported outcomes comparable to Maple et al.’s findings [7, 21, 26].

Indirect benefits reported by altruistic donors include: improved self-esteem, augmented satisfaction with life, overall increased sense of wellbeing and a feeling that donation added extra meaning to their lives. Other secondary gains include work leave and media acclaim [6, 7].

On the other hand, adverse psychosocial outcomes of altruistic donation include difficulty obtaining health or life insurance, marital and familial conflicts, depression/anxiety disorders and loss of job or educational opportunities; these are not significantly different compared to directed donors and the general population [6, 7, 21, 26]. Similar to living donors, there may be an increased risk of post-donation hypertension (26.8%), surgical complications (1–10%) and peri-operative mortality (0.03%) [6, 7, 12].

3.5 Barriers to altruistic donation programs

Several barriers may prevent widespread use of altruistic donors:

• Donor-related factors: Though willing, donor health characteristics may limit their intent. For instance, donor obesity was reported in a study as a major cause (45%) of loss-to-follow-up amongst potential altruistic donors, and mental health concerns may render some candidates unsuitable [20].

• Society-related factors: Public perception may exaggerate the harm and safety concerns associated with organ donation and prevent interested individuals from stepping forward. This can be mitigated by appropriate awareness campaigns employing multiple educational approaches [3, 8, 10, 14].

• Transplant centre-related factors: In a study by Rodrigue et al. [8], up to 39% of transplant centres in the US do not consider altruistic donation as a viable option [8]. This hesitance is borne from different reasons including: lack of universal guidelines, fear of inducing physical and mental harm to the donors, concerns about the motives of altruistic donors, possibility of post-donation regrets, concerns that altruistic donation could lead to a decline in cadaveric donation, potential for litigation risks and potential requests for financial compensation leading to undue media attention [7, 24, 25, 27]. Some of these concerns are largely unsubstantiated and theoretical in nature [25, 27].

3.6 Ethical considerations for altruistic kidney donation

The concept of altruistic kidney donation has engendered many ethical issues which have slowed its acceptance and practice in the transplant community [27]. The concerns regarding some of the ethical principles are elucidated herein:

Beneficence: Since the primary obligation of the physician is to do no harm and protect patients, would altruistic donation not contradict the ethical principle of beneficence in relation to the donor even if it is at his own behest? Furthermore, as kidney transplantation is beneficial to patients with ESKD, would it be ethical to decline a potentially lifesaving procedure due to uncertainties about the motives of a potential altruistic donor? [8, 14, 16]. There are no simple answers to these questions but appropriate informed consent and pre-donation evaluation would ensure adequate protection of the donor. Additionally, laparoscopic donor nephrectomy minimizes the surgical risks borne by the donor.

Non-maleficence: The phrase “First do no harm” is one of the dictums that forms the bedrock of the modern practice of medicine. Is it then ethical for transplant physicians to actively solicit for altruistic donors? Although altruistic donation is potentially beneficial to a recipient, it may contravene the ethical principle of non-maleficence to the donor [8]. There have always been ethical concerns about exposing apparently-healthy individual to potential anesthetic and surgical risks. Some of these concerns have been partially allayed with advances in surgical techniques and post-operative care, improving donor safety.

Autonomy: Does rejecting altruistic donation contravene donor and recipient autonomy? Should the recipient reserve the right to reject or accept an organ from an altruistic donor? Is it paternalistic for transplant centres to arbitrarily refuse to evaluate such donors? [8, 14, 27]. While transplant physicians or nephrologists may be hesitant to accept kidneys from altruistic donors, they should only reject such organs on medical grounds after disclosure to the transplant recipients [8, 14]. Another ethical concern is pressure from the transplant centres on potential donors, especially in pooled donation schemes [8, 14]. This would be an indication to stop the process as it affects the ethical principle of donor autonomy [8, 14].

Justice: How do transplant programs maintain justice in the allocation of altruistic donor organs (i.e. distributive justice)? Who decides who benefits from altruistic donation, especially in the face of scarce donor organs? Some transplant centres prefer to channel such donations through a local OPO or national transplant waitlist to ensure justice, equitability and non-discrimination, as this reduces selection bias, allowing the recipient with the best compatibility to be transplanted [27].

Financial compensation: Should altruistic donors be offered financial compensation? Under the NOTA, it is acceptable to reimburse donors for minimal expenses incurred like medical bills, lost wages and transport fares [15, 27]. Excessive compensation is frowned upon, to avoid commercializing organ donation, prevent undue inducement of donors and protect the recipient from exploitation, blackmail and emotional distress [8, 14, 27, 28]. This is important because over 10% of global kidney transplantation occurs through organ trafficking and transplant tourism [27, 29]. In developing countries, patients pay out-of-pocket for renal replacement therapy and cadaveric donation is lacking, so commercialized transplantation is an open secret though illegal, and transplant tourism to procure donor organs is prevalent [14, 27,28]. This contrasts with the controversial Iranian model of compensated living unrelated kidney donation which has reduced waitlist times, with over half of ESKD patients having functional renal allografts [30, 31]. Some authors have proposed that incentivizing or regulating commercial organ donation may proffer a long-term solution to the scarcity of donor organs [32, 33, 34].

Other ethical considerations: Should donor-recipient pairs have contact in the peri-operative or post-donation period? While this may be beneficial, in some cases, it may foster unrealistic expectations of gratitude and indebtedness in the donor and may set him or her up for future disappointments [8, 27]. Unrelated living donation are considered less prone to subtle pressure and coercion as may occur in genetically or emotionally related donors [2, 16, 27, 28].

4. Conclusion

The practice of altruistic donation, although ethically controversial, has garnered success and popularity. The process is highly variable amongst individual transplant centres, leading to confusion, misconception and lack of motivation for interested individuals. Therefore, the process of donor evaluation, allocation and post-donation follow-up must be standardized globally. A rigorous evaluation protocol as well as mental health assessment and informed consent are imperative for successful implementation.

Advancing the practice of altruistic donation requires public awareness on the benefits of donation, donor risk minimization, advocacy and involvement of all relevant stakeholders. This procedure has the potential to increase transplantation rates and alleviate organ shortage and should hence be encouraged.

Acknowledgments

We acknowledge Professor Ahmed Halawa for his support.

Conflict of interest

The authors declare no conflict of interest.