Ethical and Legal Aspects of Kidney Donation

Justice Versus Utility

Perhaps the greatest challenge faced by transplant professionals is how, and according to what criteria, organs should be allocated. A range of options exists when considering the distribution of scarce resources. These include distribution on the basis of social worth or merit, according to the ability to pay, by queue (first come, first served), by lottery (chance), and by maximum benefit (greatest good to the greatest number). The last method is considered most appropriate by the international transplant community.

However, maximizing the benefit of this scarce resource raises ethical issues about the utility of transplantation versus equitable access. The utilitarian argument proclaims that each organ should be transplanted into a recipient in whom it will survive the longest (optimal benefit from each organ). The principle of equity or justice requires a fair opportunity for everyone in need of an organ transplant.

Which of the two is the better way to allocate organs? According to Courtney and Maxwell, transplant doctors must always find a compromise between both potentially conflicting ethical principles. Veatch argues that the conflict between both principles is inevitable. To resolve the conflict, one must be aware of the problems caused by each principle.

Problems Caused by Utility

Organ allocation networks were, for a long time, driven by utilitarian considerations. The US United Network for Organ Sharing, for instance, used to allocate livers in a way it believed would produce the most benefit. That meant giving livers to healthier and local patients first. Giving organs to those who were sickest was not favored, because it meant decreased survival rates. It was believed that local allocation would encourage more people to donate. Local priority also meant shorter cold ischemia times and better graft and patient survival rates.

The same considerations were applied to kidney allocation. In the 1980s transplant doctors gave priority to recipients who had the best human leukocyte antigen (HLA) antigen match. The problem was that allocating on the basis of HLA-matching criteria might have favored more healthy patients at the expense of sicker patients. Allocating organs on the basis of utility only excludes patients that have an older age, are diabetic or obese, or carry other comorbidities. Maximizing medical utility also requires relying on social data to identify groups that do better statistically, regarding, for instance, race, income, and gender. Defenders of the principle of justice or equity thus began to claim that allocating on the basis of utility was unfair.

Problems Caused by Justice or Equity

In the 21st century more allocation policies arose that were based on justice. Justice is considered synonymous with the concept of equity and is associated with the idea of equal treatment or nondiscrimination.

The problem with justice as a criterion, however, is that it is not exactly clear what is meant by justice . One interpretation is to allocate organs to those on the waitlist who are the “worst off.” But what is meant by saying that justice requires giving priority to the worst-off patients? Similarly to those who endorse utility, a group could be selected who are socially worst off, but may not have a serious medical disease. And even if we do focus on those who are medically worst off, it still remains unclear which candidates on the waitlist should be labeled worst off. The Model for End-Stage Liver Disease formula, to allocate liver grafts, implies that the worst off are those in most urgent need and who will die the soonest. However, one could also argue that the organs should go to the person with the most severe complaints, even if he or she is not predicted to die very soon.

Who Decides Between Justice and Utility?

Who decides what the morally acceptable method of allocation is?

Most countries have no explicit legal provisions governing the manner of organ allocation. Most laws state or imply that the allocation criteria should be medical only, thus leaving the question open on what ethical criterion the allocation should be based.

The Council of Europe Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine (1996) (Biomedicine Convention) states that “Parties, taking into account health needs and available resources, shall take appropriate measures with a view to providing, within their jurisdiction, equitable access to health care of appropriate quality” (Article 3). This is proclaimed in accordance with the purpose of the Convention (Article 1) that states that the treatment of persons shall be “without discrimination.”

The Additional Protocol to the Convention on Human Rights and Biomedicine concerning Transplantation of Organs and Tissues of Human Origin states that “Parties shall guarantee that a system exists to provide equitable access to transplantation services for patients … organs and, where appropriate, tissues shall be allocated only among patients on an official waiting list, in conformity with transparent, objective and duly justified rules according to medical criteria.” The World Health Organization (WHO) states that “in the light of the principles of distributive justice and equity, donated organs should be made available to patients on the basis of medical need and not on the basis of financial or other considerations.”

The aforementioned provisions illustrate the legal intention that access and allocation cannot rely on nonmedical factors. But these laws do not answer the question of who is allowed to “pick and choose” between utility and justice.

Transplant professionals, driven by the Hippocratic oath to do as much good as possible for the patient, commonly tend to lean toward the efficiency side of the calculus (local allocation). The general public, philosophers, and lawyers lean toward justice (national or regional allocation). During a debate about the issue between doctors and nondoctors in 1992, a political compromise was made wherein justice and utility were considered to count equally in organ allocation.

David Price has stated that these principles are not necessarily in conflict. Both are possible criteria for allocating organs. Veatch says that balancing the competing claims is a process for public debate “by the entire moral community.”

Allocation of Marginal Donors

Absence of Conditionality

The third principle that governs the allocation of deceased donor organs is the absence of conditionality. For instance, the UK Department of Health states that “it is a fundamental principle of the UK donation program, that organs are freely and unconditionally given. It is therefore not acceptable, to attach any conditions to the donation of organs, other than by specifying the organ/s for which consent/authorisation has been given.”

Thus although an individual is the only person who is entitled to consent to donation of his or her organs, the moment they are donated and enter the stage of allocation, principles of fairness and equity govern distribution and not the authority of the individual donor.

Conditional donation challenges these principles. Conditional donation is when a donor organ is offered to a specific class of recipient. Directed donation (further discussed later), when a donor organ is directed toward a specific person, also challenges the principles of fairness and equity. Both forms of donation are considered unacceptable based on current allocation regimes.

Yet one can think of scenarios that may render directed donation acceptable. Take the example of a planned living donation procedure that is underway in accordance with legal and medical requirements. Before the procedure, the potential living donor suddenly dies and becomes a deceased organ donor. At a workshop held during the Ethical, Legal, and Psychosocial Aspects of Organ Transplantation (ELPAT) conference, the majority of participants claimed that such deceased directed donation should be allowed. However, most agreed that others in urgent clinical need should not be harmed by the request for the organ by the designated recipient.

New Donor–Recipient Relationships

Because of the shortage of deceased donor kidneys, LKD has become the most important alternative to fulfill the need of the increasing amount of patients with end-stage renal disease in need of transplantation.