Transplant Physicians Bear Full Responsibility for the Consequences of Kidney Donation by a Minor

Delmonico and Harmon report that there were 60 minors in the United States who served as kidney donors from 1987 through 2000 (1). This is quite startling, based on the analysis of the histocompatibility match and age of the recipients of these kidneys. The authors suggest that a practice pattern exists that is not endorsed and is contradictory to the recommendations of a recent Consensus Conference on Live Organ Donation (2). But even without the recommendations of the Consensus Conference, which recommendations were not spelled out when most of the kidney transplants in question were performed, the ethical tenet upon which all medical practice is based –do good, and above all, do no harm– should have been generally sufficient to not have allowed most of these transplants to have been performed. The goal of organ transplantation is alleviation of suffering and prolongation of meaningful life. As a corollary, organ transplantation should in no way involve exploitation of a child as a kidney donor and, thus, I place full responsibility on transplant surgeons and physicians, and not on the courts, to protect minors who might serve as organ donors.

In the analysis of the United Network for Organ Sharing (UNOS) data base, Delmonico and Harmon show that only 12% (seven patients) of all recipients of kidneys from minors were identical twins, where a minor donor can be considered because of the very close emotional relationship of identical twins and the very favorable, complete immunologic compatibility where no immunosuppressive medication is required. However, justification for the use of minor donors in the other 53 cases is highly questionable, especially with the consideration that 60% of the recipients were adults and over half of these adults were > 30 years of age, with four recipients > 50 years of age. Moreover, seven adult recipients, aged 38–54 years, had renal failure secondary to diabetes mellitus, where absolute exclusion of future diabetic potential in the minor donor would probably be very difficult to accomplish.

It is surprising that the courts would have given authorization to proceed in the greater majority of cases that were not identical twins. Kidney donation can be an emotionally charged event for a family and the interjection of attorneys to assist in the decision regarding a minor donor could possibly be biased by the presentation from the parents and also by a nonobjective assent from the minor who perhaps desires not to displease his parents. Given this hypothetical scenario, one can see how it could happen that 88% of all recipients from minors were not identical twins, and 68% of nonidentical twin recipients were adults.

We recognize informed consent as an integral part of any surgical procedure that would be performed on any patient, and it is here that we need to critically ask the question, ‘How informed and understood is “informed consent” in the case of a minor serving as a kidney donor?’ We are well aware of the sometimes considerable pressure and coercion that adult sibling donors feel placed upon them to donate and that pressures are also likely to prevail with potential minor donors. The primary reasons for court authorization are, first, to confirm the minor is competent to make the decision and second, to confirm that the minor is making a voluntary decision, free of undue family pressure (3). The courts, however, do not provide a complete list of both short-term and long-term risks to the potential donor and cannot give assurance that these risks are fully understood and appreciated. Only the transplant surgeon or physician can assure careful scrutiny of risks, and if all potential risks are carefully considered, kidney donation by a minor should not even be an option, except perhaps with identical twins.

Most minor donors in the Delmonico-Harmon report were adolescents. Adolescence can be an emotionally troublesome period. In addition, preadolescent and adolescent years are important formative years in the emotional, physical and intellectual development of a minor, so that there must be very good justification to interrupt these years with a major surgery that is not medically needed by the minor. There are issues of postoperative convalescence and disruption of school, activities, play, etc. But most important are the potential risks of the actual surgery which the preadolescent or adolescent may not fully appreciate or comprehend because of immaturity or lack of life experience. For example, there is a death rate of one in 2000 live donors (1) and there are certain, though limited, risks to the remaining native kidney from trauma, neoplasm and infection (such as pyelonephritis of pregnancy). Having only one kidney may alter physical activity and curtail engagement in contact sports. It may also alter choice of career, such as athletics, law enforcement, military, etc. These issues must be fully understood and it is doubtful that court authorization can presume a truly informed consent. So the ultimate responsibility must reside with the transplant surgeon or physician who opens the door for consideration of a minor for kidney donation.

From the outset, it appears probably best that kidney donation not be an option for a minor, except for the possible identical twin situation. If a minor is allowed to donate, the transplant surgeon or physician needs to make a commitment and arrangements for the maintenance of a continuous medical and psychologic watch over the minor for the remainder of his/her life to avert complications and to make sure that the donor's remaining kidney is in good shape. This is an incredible responsibility which only the transplant surgeon or physician can understand and undertake, and which responsibility is ipso facto assumed by entertaining the option of kidney donation by a minor. It is because of these reasons, and in order to completely avoid the consideration of any minor (with the exception of identical twins), that it is probably best not to consider tissue typing or blood typing any potential kidney donor < 18 years of age, a practice which I and many others have always followed. This avoids unrealistic and stressful expectations and makes it clear from the start that a minor will not be considered. Thus, no formal discussion regarding live kidney donation should occur with any potential kidney donor until the attainment of age 18 years.

To not use a minor for kidney donation is not only beneficial to the potential minor donor, but also to the potential recipient. The latter will not be burdened with the emotional trauma caused by an adverse event to the minor donor, but can also have an excellent and equivalent survival outcome with a kidney from an adult living donor source, whether related or unrelated. Since 1988, there has been a substantial increase in both short-term and long-term survival of kidney grafts from both living and cadaveric donors (4), so that as Delmonico and Harmon have shown, there appears to be no significant advantage in graft survival with the use of minor donors in essentially all donor-recipient pairings, except those of identical twins. Additionally, graft survival can easily be maximally enhanced by carefully avoiding delayed graft function (5).

The conclusion by Delmonico and Harmon, calling for an ethical commitment to restrict live kidney donation from minors to mainly the extraordinary circumstance of an identical twin, is very sound and is validated by their analysis of the UNOS data base. In addition, this is the only appropriate and logical conclusion, when one considers both the Consensus Conference on Live Organ Donation and the ethical tenet upon which medical practice is based.