The Transplantation Society Statement on Directed and Conditional Donation
Notice bibliographique
Résumé
The allocation of organs from deceased donors should be based on the principles of justice, equity, and utility. Local policies for organ allocation to patients on the waiting list should be developed in line with these principles. Public trust is a critical factor for successful deceased donation programs. It is thus important that the principles for organ allocation are ethically based, transparent, and broadly accepted in society. Directed Donation On rare occasions, a relative or a friend of a patient on the waiting list becomes a deceased donor. Directed donation from a deceased donor to a family member, or to an individual with whom the dead patient had a long-standing emotional relation ship is acceptable. It is also highly probable that such a donation would be consistent with the wishes of the deceased donor. The other organs procured will still be directed to patients at the top of the lists. In live donation programs, a longstanding relationship between the donor and the recipient has long been considered an absolute prerequisite. Such a relationship is the basis for the majority of live donations, and it seems reasonable to also allow such donation after death. Tenets of directed deceased donation: The recipient in the directed donation is a specific named individual and not a member of a group, class, or organization. The recipient is an individual with a personal or long-standing emotional relationship to the donor or donor family. There is no monetary exchange, valuable consideration, or other coercive inducement involved in the donation. Relevant national or local law does not prohibit directed donation. Below are described a number of cases involving directed and conditional donations of organs from deceased donors. The Ethics Committee of The Transplantation Society prefers not to comment on the detail of these examples. The general rule is that all patients on the waiting list for transplantation should be treated equitably. The organ allocation system should not allow that certain groups of people are put at a disadvantage. Therefore, directed donations to certain groups for example by gender, ethnicity or sexual orientation, cannot be accepted as they automatically discriminate against other groups of patients. Because of organ shortage and long waiting times, solicitation by patients and their families for an organ may occur in various media or through the internet. However, access to the media and the internet varies throughout the population. If such directed donations to strangers were allowed it seems likely that the rich, young, charming, and well-educated would benefit at the expense of the poor, old, less charming, and less educated parts of our patient population. These donations would then violate the principles of justice and equity, and should therefore be avoided. Publicizing the history of an individual patient often provides an efficient way to improve understanding of the need for donations and the new life a transplant can provide. Still, such media attention should focus on improving the general motivation to donate to the patient who will accrue the greatest benefit—the patient at the top of the list. Conditional Donation The cases submitted describe two kinds of “conditional donation.” In one, there are conditions on which organs and tissues that may be procured, whereas in the other, the conditions relate to the selection of recipients for the donated organs. The term “conditional donation” is usually reserved for the latter case. Ideally, each individual should make a decision early in life on whether or not to donate after death. As donation is not obligatory, it also seems reasonable to allow the individual to decide which organs and tissues that may be procured. The right to make such decisions during life is a part of an individual's autonomy, and should not be seen as a violation of the rights of the patients on the waiting list. In contrast, TTS considers the conditions imposed on the selection of recipients interfere with the principles of justice, and equity, and sometimes also the principle of utility. In this situation, the rights of the recipients based on these ethical principles overrule the donor's right to autonomy. Despite the organ shortage, the offer for donation should therefore be declined. Coming to a Decision on Donation It is one of the fundamental principles of The Transplantation Society that donors of organs and tissue are not exploited and that consent for donation is obtained without coercion. It seems reasonable that we as autonomous individuals have the right to decide what will happen to our bodies after death. This right includes deciding on deceased donation. The legal frame-work on donation varies between countries. In some places, opt-out systems are applied; it is then important that the public is well-informed and that the systems for registration of a no to donation are easily accessible. However, most countries have chosen various kinds of opt-in system, with some using donor registries or donor cards. Regardless of the choice of system, the wishes of the deceased person should be respected. In cases where the wishes of the deceased are unknown, some countries have presumed consent, and so some of the situations described below would be unlikely to occur. In others, the question of donation is posed to a substitute decision maker, usually the closest relative. The task of the substitute decision maker is to interpret the wishes of the deceased individual and thus exert the right of the potential donor to make an autonomous decision. Other legal systems prescribe a combination of presumed consent and the possibility for the relatives to interpose their veto on donation. Public knowledge regarding donation is variable and sometimes superficial. It is likely that many donors expressing a wish for conditional donation are not aware that such discrimination is considered unacceptable. Basically, this individual was positive to donating his organs. It is thus not evident that the potential donor would have declined nonconditional donation if he had understood the consequences of his demands. In some cases, it may then become the task of the substitute decision maker to interpret the decision that the potential donor would have taken had he been aware of this policy. Appendix The members of the Ethics Committee of The Transplantation Society are Annika Tibell, Sweden Chair; Francis Delmonico, USA, Vice Chairman; Timothy Pruett, USA; Adibul Rizvi, Pakistan; Arthur Matas, USA; Megan Sykes, USA; Mahendra Bhandari, India; Arturo Dib Kuri, Mexico; A. Vathsala, Singapore; Adeera Levin, Canada; Marwan Masri, Lebanon; Keiichi Kubota, Japan; Mario Abbud-Filho, Brazil; Wojtek Rowinski, Poland; Douglas Hanto, USA; and H.M. Maiga, Mali.
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