A Report of the Ethics Committee (June 1993)
Summary of the Concept
The concept of preferred status involves the rewarding of organ donors by providing them with a modest but definite recognition, in kind, for their willingness to participate in the system. A precedent to some degree is credit to blood donors should they need blood in the future. Individuals who have signified their intention to be organ/tissue donors, or perhaps, to a lesser degree, first degree relatives of those who have signed up or have actually been donors, would receive points or other value that would somewhat facilitate their likelihood of receiving an organ, should they need it in the future. Preferred status has been viewed as a reasonable approach to increasing fairness in the system and potentiating organ donation by some (1-3) but with abhorrence by at least one critic (4).
At least two ethical issues are important in considering Preferred status: If preferred status were instituted, what would be the balance between intrinsic ethical good and bad; and, as an independent utilitarian ethical issue, what would be the impact on the system? In other words, it is necessary to consider both whether the process is intrinsically justified ethically, and whether it would actually help or harm organ donation.
The impact on the system would depend strongly on the Perception of society and the transplant community as to the ethical worth of preferred status, and this would involve mainly the degree to which the process was deemed to be fair. A net ethical good from this point of view would accrue from an increased perception that organ donation is important to all, transplants are successful, and the system works without barriers to the disadvantaged segments of society.
The net ethical worth of preferred status is partly an issue of justice. Is it fair for an individual who is willing to participate in the system of transplantation to not receive an organ while another medically similar individual who was unwilling to participate receives a transplant? On the other hand, it may be framed in terms of autonomy. Intrinsic to the present approach to organ donation is the autonomy of each person to decide. Any policy change in the direction of inducement to donation may be construed as impinging on that autonomy.
The altruism involved in different approaches to encouraging organ donation might be put on a relative scale from most to least altruistic as follows: the present system; presumed consent; routine retrieval; preferred status; and payment (in some form) in exchange for organs. There is a clear distinction between the implications of opting in for preferred status, and receiving payment.
One of the most important aspects of the preferred status concept is its potential to provide recognition for those opting into the system without the unfairness and tawdriness intrinsic to any form of financial incentive or recognition. If the definition of a modest but definite benefit is optimal, preferred status has the potential to maximize fairness in the system, in excess of that at present. In general, the value or points awarded should be sufficient to be tie-breakers. The value should probably not be sufficient to place an elective case with a short time on the list ahead of one who is about to die, or who has been waiting for years. Given this aim, it seems possible that preferred status would help facilitate a change from the present general sense of personal un-involvement to a majority that agree to opt in.
As a corollary to this, those in society that are disadvantaged in general, and therefore in terms of access to medical care, would be dealt with most fairly by the possibility of preferred status. Because the life-giving organ represents a benefit that transcends money, its value is the same to a very poor disadvantaged person as to a wealthy one, unlike a monetary consideration. It would be hoped that the disadvantaged, now particularly likely to view organ donation and transplantation with suspicion, might realize a sense of democracy in their rightful access to the same option (that of preferred status) as any other citizen. This could be particularly important in the case of kidneys for Blacks, who have a particular need at present, in view of their higher incidence of kidney failure, since it would encourage donation by this segment of the population that is particularly likely to also need the availability of a transplant.
With regard to impact on the system it would be hoped that many who had not found it important to consider the issue of organ donation would be encouraged think about it and agree to participate, thereby eventually increasing the number of registered organ donors substantially. However this might not produce enrollment of sufficient numbers to directly increase organ donation much, at least initially. More likely to be important in the short run would be the indirect benefit of complimentary discussion in society, which would foster increased awareness of the success of transplantation, the appropriateness of organ donation, and the importance that society places on this process.
Some possibilities by which preferred status might produce harm are derived from negative speculations on its potential for good. The primary objection is that there are two sides to the issue of fairness. Consider the scenario of two medically similar patients, for whom preferred status would be the tie-breaker. One patient has signed an organ donor card, but has had a life of doing harm to society, robbing and beating others. The other patient has lived an exemplary life, has contributed financially and personally to medical causes including transplantation, and therefore has directly benefited many other people, but has not felt comfortable with agreeing to organ donation. Is there justice in the former person receiving the organ, allowing the one arbitrary fact of opting into the system to override all the other comparative points, which would tend the choice toward the latter (4)
One objects that in fact such judgments are not made now. In fact opting in is not envisioned as a determinant of moral worth but rather a social contract, a sort of insurance that everyone has a right to if they wish to make the deposit. However it would be disingenuous to argue that there is not an imprimatur of worth connected to the concept of preferred status. If one factor, preferred status, where to be instituted, might that start the system down a slippery slope of increasing calculations of worth that have so far been avoided?
Another danger is that the hoped-for amelioration of suspicion of the system on the part of the disadvantaged would not result, but rather it would be viewed as another scheme by the establishment, this time to obtain more organs for others. Some people express willingness to be an organ donor, but would not carry a donor card out of fear that their terminal care would be compromised to obtain their organs. This possibility is potentiated by the lack of access to extra-renal, and to some degree, renal, transplantation, for the disadvantaged. The increased access to -an organ that preferred status could provide would not be valuable if reimbursement for the necessary medical care were not available. In addition, in spite of attempts to provide equal access to the information, equality of the system over disparate socioeconomic status would be imperfect. As is generally the case with anything, those who are well-read and living above the survival level would be more likely to benefit, since they would be better informed about the option and have better medical care underlying the possibility.
Perhaps the most important negative aspect of the idea of preferred status is one that it shares with all other forms of inducement: it is likely to be seen by some as inherently compromising the altruism that is a key ingredient of the present voluntary system in which organs are donated as gifts.
Another proposed problem is shared with all approaches such as required response to the driver's license donation question, which is that, given results of public opinion polls, the process is likely to have the undesired outcome of forcing a large fraction of negative responses, which might decrease donation in fact. This is a difficult ethical issue, since this might be an intrinsic good, increasing as it does the individual's autonomy. However it could impair the system that potential organ recipients are relying upon.
As noted above, the value or number of points is critical since it should represent a meaningful but not overpowering advantage. This may be impossible to achieve in practice. A serious drawback is that the system may suffer on the one hand if the value of the preference is quite large, since it could be interpreted as proof that the system is not fair and can be manipulated. On the other hand, if the help represented is too minimal, the proposal would appear to be disingenuous, as not really meaningful.
Money and personnel resources would be required and it would be necessary to estimate these. Implementation of preferred status should not detract from present conventional organ donor efforts.
Aside from ethical worth, how practical is such a system? It is not the purpose here to invent a detailed system. As envisioned, a national registry, perhaps managed by HCFA on the basis of Social Security Numbers, would list all individuals who declared either their intention to be a donor, or their wish not to be. This would be accessible across the country essentially instantaneously. It is likely that security of confidentiality would be maximized but not guaranteed. Individuals could register at or after age 18. People with known disease threatening the relevant organ would not be eligible. A one-year waiting period would be invoked to avoid seriously ill patients signing up for immediate benefit. Beyond this, no attempt would be made to determine prior knowledge of disease that might require organ transplantation. A registrant could change their mind at any point and re-designate their category.
Education of the public about the system would be a major effort. Perhaps focus groups and town meetings could be used to attempt to democratize the availability of the information as much as possible.
The benefit might be a few points on the waiting list. The number of points would have to be computer-modeled based on the waiting list to establish an appropriate (see above) benefit and might require ongoing reanalysis as patterns of transplantation changed. Different organs would probably need slightly different treatment. It might be appropriate to also provide a fraction of the points to first-degree relatives and spouses. This might greatly extend the potential benefit, although if the fundamental benefit were calculated appropriately, the fractional benefit might not be substantive. Perhaps one could accrue points from two or more relatives, but never to the same point as if one gave permission for donation personally.
It is argued that the chances of needing a transplant are, in fact sufficiently small that the preferred status would be unlikely to benefit any particular person by actually becoming needed. However it might still be accepted if viewed as intrinsically fair, and could still have a powerful benefit by heightening public awareness and acceptance of organ donation.
There are a series of imaginable ways this system could be "gamed" and the most obvious would have to be addressed, but the overall impact of improving acceptance of organ donation and establishing communication of its value to all would not be impacted.
Possibly the system might best be implemented only for kidneys: this would benefit Blacks particularly, and avoid problems stemming from reimbursement not being generally available. Unfortunately with regard to kidneys it is unlikely to improve access for high PRA patients, regardless of the magnitude of the preference. Individuals could nor in this case sign up if they had known kidney disease; violation of this would most efficiently be monitored by analysis of the situation at the time the patient was listed as a potential recipient.
Ultimately, if organ donation were being agreed to by the vast majority of potential donors, the system might wither and become meaningless, a most optimal outcome.
Advantages of preferred status over other approaches to facilitation of organ retrieval include intrinsic fairness with regard to "opting in," the fact that the special priceless organ does not represent financial payment, and that it would be equitable across strata of society. A trial could be implemented without requiring any alteration in existing legislation, unlike other mechanisms under discussion. The major detractions include that it still represents compensation akin to purchase, that it might raise suspicion rather than increase acceptance of organ donation, that there is no ethical justification for attaching unique moral worth to willingness to give, and that the implementation would be troublesome. In balance, the recommendation is for wider societal discussion before considering concrete plans for implementation.
- Kahan, B.D.: Rewarded gifting -- pro and con: bringing the arguments into focus. Transplantation and Immunology Letter 8:3- 10, 1992.
- Kittur, D.S., Hogan, M.M., Thukral, V.K., McCaw, L.J., Alexander, J.W.: Incentives for organ donation l Lancet 338:1441- 1443, 1991.
- Kleinman, I., Lowy, F.H.: Ethical considerations in living organ donation and a new approach: an advance-directive organ registry. Arch Intern Med 152:1484-1488, 199Z.
- Capron, A.M.: More blessed to give than to receive? Transplant. Proc. 24:2185-2187, 199Z.