Organ transplantation stands out as an epitome of the potential of scientific progress in alleviating human suffering. In equal measure, it is also emblematic of the ethical challenges involved in the process of complex medical decision making.
The guiding principles of medical ethics- autonomy, beneficence and non-maleficence find prominent expression in the area of living donor organ transplantation. Respect for autonomy dictates that health care professionals should yield to the decision making capabilities of individuals as autonomous agents, Beneficence prescribes that decisions taken after balancing the risks and benefits should always benefit the patient, and non-maleficence encodes the idea of primum nonnocere, that harm disproportion- ate to the benefit of treatment should be avoided .
Beneficence to the recipient is the foundation on which the entire edifice of transplantation stands. For patients with end stage renal disease (ESRD), living donor renal transplantation provides the best possible chance for superior outcomes.
Renal transplants account for up to 70% of the more than 1,00,000 solid transplants performed annually world wide, of which 46% are living donations . All decisions to sanction donation need to stand the scrutiny of the standard of non-malicence to the potential donor, which is seemingly an impossible task because donor nephrectomy invariably has the potential to physical harm, albeit in varying degrees. These evidently contrarian positions are balanced by autonomy as the primary ethical code which recognizes the informed donor’s right to choose and to donate voluntarily, understanding and accepting the possibility for harm.
Assessment of the motivation for donation is critical in deciding whether transplant surgery could be considered ethically and morally acceptable. Although apologists for organ trade would stress the individual’s right over his or her body including the right of sale of body products or parts, it is paramount to remember that a decision taken under the grinding yoke of poverty to sell an organ is never truly independent . Poverty has been rightly identified as the worst form of coercion.
Legalizing payment for donation has been touted as the panacea for obviating exploitation of the poor, an experiment that has found application in only one country . Poverty has been reported to be disproportionate among donors compared to recipients in Iran (84% vs 50.4%), implying possible systemic failures in ensuring that the ethical principle of justice is enforced . In addition, the scarce data avail- able from the country have suggested relatively poorer outcomes in paid compared to altruistic donors. Donor dissatisfaction has been documented with 76% of paid donors in a survey opining that kidney sale should be banned and that given a second chance they would prefer to beg (39%) or obtain a loan from usurers (60%) rather than vending a kidney . The incidence of microalbuminuria has been found to be higher (35% vs. 0%, p < 0.001), and general health and social functioning Quality of Life (QOL) scores significantly lower (p < 0.001 and p = 0.02, respectively) among paid unrelated donors than among related donors . The demise of altruism and the decline in living related donations directly resulting from the paid donor program have been suggested as barriers to advancement of transplantation in Iran .
A nuanced understanding of the prospective donor’s socio-cultural milieu is as important to identifying coercion as is an assessment of economic realities. Patriarchy and gender inequality along with the established norms of the primacy of the needs of the family unit over those of its individual members are prevalent in several parts of the world. Resultant is an environment where non-empowered relatives of end stage kidney disease patients find themselves expected to donate, and transplantation becomes an entitlement, often reinforced by well-meaning physicians trying to help their patients.
Though organ donation has been depicted as a “gift of life”, improved patient outcomes with adequately performed dialysis make a literal interpretation of this motto inaccurate in the setting of renal transplantation. While it is indisputable that renal transplantation is the treatment of choice for end stage kidney failure for the properly selected patient, portraying it as the only way to keep a near one alive to the prospective donor may be ethically unviable.
Informed consent is pivotal to autonomous decision making and involves a full understanding of not just the immediate but also the long-term consequences of donor nephrectomy. The risk of immediate surgical mortality of living donation is small and the long-term risks of mortality and end stage renal disease have not been to be shown to be increased in donors compared to the general population in most studies . However, recent data from studies with longer term follow up have shown renal donors to be at an increased risk for both cardiovascular and all-cause mortality as well as end stage renal disease in comparison to equally healthy non donors who would have been eligible for donation . The absolute rates remain reassuringly low in both groups and as yet there is no reconsideration of the belief that living donation is safe.
Expanding ESRD prevalence and better survival on dialysis have resulted in the creation of a large population of patients waiting for renal transplantation all over the world. Scarcity of data impedes the prediction of long term risks in the so called marginal living donors and makes informed choices difficult thereby adding another layer of ethical complexity . Deceased donor transplant programs exist in a rudimentary form, or not at all, in many geographic regions, a deficiency that needs urgent rectification. A black market for organ trafficking and trade thrives in this widening chasm. The elimination of transplant waiting lists and the promise of better outcomes for patients, however needy they may be, can- not be construed as a validation of the commodification of human beings. As the declaration of Istanbul unambiguously states- organ trafficking and transplant tourism violate the principles of equity, justice and respect for human dignity .
Ends do not always justify the means.
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