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Ethically Acceptable Compensation for Living Donations of Organs, Tissues, and Cells: An Unexploited Potential?

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Abstract

The number of living donations of human organs, tissues, and cells falls far short of the need. Market-like arrangements to increase donation rates have been proposed, but they are broadly considered unacceptable due to ethical concerns and are therefore not policy relevant in most countries. The purpose of this paper is to explore a different approach to increasing living donations, namely through the use of ethically acceptable compensation of donors. We review the compensation practices in Europe and find a lack of reimbursement of incurred costs and lack of compensation for non-monetary losses, which create disincentives for donation. We draw on a well-known philosophical theory to explain why donors are rarely fully compensated and why many existing proposals to raise donation rates are seen as controversial or even unethical. We present and discuss three categories of compensation with the potential to increase donation rates in an ethically acceptable way.

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Notes

  1. For kidneys: Not including Luxembourg and Spain. For livers: Not including Latvia and Luxembourg. Note also that the number of patients who died while on the waiting list is likely to underestimate the true shortage of kidneys, since the scarcity of organs may preclude physicians from including more patients on the waiting lists [1, 3].

  2. See Appendix 1 for a non-exhaustive list of European initiatives.

  3. Appendix 2 contains a non-exhaustive overview of international (with a European focus) rules and guidelines on donations of organs, tissues, and cells.

  4. A notable exception is Iran, where a government-funded and government-regulated living unrelated donor kidney transplantation program was implemented in 1988 [25, 26]. Donors receive a payment from the program, and “a rewarding gift” from the recipient (or a charitable organization if the patient is poor) is negotiated. This program led to a significant increase in the number of living unrelated donations, and by 1999, the waiting list was eliminated. Whereas the system in Iran has taken precautions to mitigate some of the ethical problems associated with the program, the quality of life for former donors has nevertheless been questioned [27].

  5. An individual’s willingness to act in the consideration of the interests of other persons without an ulterior motive [35].

  6. We can think of \(\underline{U}\) as the utility of the donor if the donated material does not benefit a patient but is used for some other “morally neutral” purpose.

  7. In Fig. 2, we assume \(U^{n} > U^{m}\). Of course, \(U^{n} < U^{m}\) is possible as well.

  8. For example, “(…) skin, bones, tendons, corneas and hematopoietic stem cells”.

  9. Reproductive tissues and cells are defined as “(…) all tissues and cells intended to be used for the purpose of assisted reproduction” [37], mostly eggs and sperm [8].

  10. At the remaining centers (46% for kidneys and 30% for livers), income loss during recovery and hospital stay was mostly reimbursed (86 and 84% of the centers, respectively). Income loss during wake up and costs for the evaluation process, hospital stay, or postoperative follow-up were reimbursed in 54–76% of centers.

  11. It should be noted that considerable differences exist between European countries, with North-Western Europe having the highest share of transplant centers that provide reimbursement for living kidney donation (66%) compared to the Mediterranean and Eastern parts of Europe, with a share of approximately 20% [39].

  12. Here, “costly” refers to “(…) pain, suffering, scarring, time away from work and leisure, and undocumented long-term donor health effects implied by an organ donation”, i.e. both monetary and non-monetary losses.

  13. We will not present a detailed exposition of the different elements of Walzer’s theory or discuss the arguments or counterarguments of the subtler details of the theory. For a collection of comments on and criticisms of Walzer’s ideas along with his own response to the issues raised, we refer to [51]. See also [52].

  14. Judith Andre gives an account of blocked exchanges and different reasons for blocking exchanges [53]. She lists, for example, the reasons that some things cannot (or should not) be sold, some things cannot (or should not) be alienated, and some things should not be changed for gain; human organs belong to the latter category.

  15. In the form of extra points awarded to previous donors in a system that ranks patients according to number of points.

  16. For the case of blood donation [18], for example, recommends discussing and researching the use of a wider array of non-cash compensations that may appeal to different groups of donors. Some examples are listed as (among other things) vouchers for songs on iTunes, phone credit and software; museum entrance; tickets to the theater, concerts or lectures; charity donations in the name of the donor; donor-exclusive t-shirts and access to exclusive donor events. Today, vouchers for app purchases and temporary access to a streaming service or news site might also be added to this list.

  17. In this context, priority simply implies getting (increased) priority to a good for which you already fulfill the criteria but may be on a waiting list. For example, when applying for acceptance to an education with limited enrollment, a donation may count towards your total score along with other things such as education, vocational training, stays abroad, and charity work.

  18. Note that this strain of the literature does not distinguish between reimbursement or compensation for non-monetary losses (hence the term monetary transfers).

  19. http://www.etpod.eu.

  20. http://www.eulivingdonor.eu/eulid/what-is-eulid.html.

  21. https://www.eurotransplant.org/cms/index.php?page=efretos.

  22. http://www.eulivingdonor.eu/elipsy/index.html.

  23. http://www.eulod.eu.

  24. http://www.eulivingdonor.eu/lidobs/index.html.

  25. https://www.edqm.eu/en/European-day-for-organ-donation-1223.html.

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Acknowledgements

We thank Trine Kjær, Anne Sophie Oxholm, Peter Zweifel, two anonymous referees and the conference participants in Uppsala (NHESG 2015) and Odense (DSSØ 2015) for very useful feedback and comments. All views and errors are our own.

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Authors and Affiliations

Authors

Contributions

All authors participated in the design of the study. NS gathered the data and prepared the first draft of the manuscript. All authors reviewed drafts. TTP prepared the final manuscript. All authors read and approved the final manuscript.

Corresponding author

Correspondence to Trine Tornøe Platz.

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Funding

Financial support from the Independent Research Fund Denmark (Grant ID: DFF—6109-00132) is gratefully acknowledged.

Conflict of interest

Nikolaj Siersbæk, Trine Tornøe Platz and Lars Peter Østerdal declared no conflict of interest.

Appendices

Appendix 1: European Initiatives to Increase Living and Deceased Donations

A wide range of projects to increase both living and deceased donation rates have been implemented by the European Union: European Training Program on Organ Donation (ETPOD), which aimed to design and validate a professional European training program to increase the knowledge of organ donation, to maximize the impact on the growth of organ donation rates and to disseminate reliable information to the health community in order to raise donation consciousness and to encourage a positive attitude towards it;Footnote 19 Euro Living Donor (EULID), which was developed to reach a consensus on European common standards regarding legal, ethical, protection and registration practices in relation to living organ donors to guarantee their health and safety;Footnote 20 European Framework for the Evaluation of Organ Transplants (EFRETOS), which aimed to provide a common definition of terms and methodology to evaluate the results of transplantation by promoting a registry of registries on follow-up;Footnote 21 Euro Living Donor Psychosocial Follow-Up (ELIPSY), which aimed to contribute to guarantee the good quality of living organ donation for transplant through a living donor long-term psychosocial and quality of life follow-up and to correlate those aspects with the recipient’s outcome with the creation of a follow-up methodology;Footnote 22 Living Organ Donation in Europe (EULOD), which aimed to increase collaboration between EU Member States in order to improve the exchange of best practices for living organ donation programs and to enhance the organizational models of organ donation and transplantation across the EUFootnote 23 (cf. the ACTOR study [12]). Work package 2 (WP2) of the EULOD project reviewed the various practices of living organ donation in Europe and aimed to identify possible legal, ethical, and financial barriers experienced by transplant professionals in living organ donation. EULOD suggests a best practice where (among other things) it is stated that all donors’ possible expenses resulting from living organ donations should be reimbursed [11]. This was also the conclusion reached by the Euro Living Donor (EULID) program from 2003-2008. The objective of the Living Donor Observatory (LIDOBS) was to obtain consensus among professionals regarding ethical, legislation and protection practices, as well as to improve the quality of the procedures by monitoring living donors through follow-ups and registry to protect living donors and promote health and safety.Footnote 24 European Day for Organ Donation each year helps a different EU Member State to encourage debate and provide information on organ donation and transplantation, legal and medical measures so that each person can decide on donation and make their wishes known to their family.Footnote 25

Appendix 2: International Rules and Guidelines on Compensation

There are various international rules and guidelines that stress the importance of donations being “voluntary and unpaid”. The EU directive addressing standards for blood donations states that “Member States shall take the necessary measures to encourage voluntary and unpaid blood donations with a view to ensuring that blood and blood components are in so far as possible provided from such donations.” The analogous EU directive related to donations of human tissues and cells states that “Member States shall endeavour to ensure voluntary and unpaid donations of tissues and cells. Donors may receive compensation, which is strictly limited to making good the expenses and inconveniences related to the donation. In that case, Member States define the conditions under which compensation may be granted” [8]. The European guidelines on organ donations state, “The principle of non-payment shall not prevent living donors from receiving compensation, provided it is strictly limited to making good the expenses and loss of income related to the donation” ([13], article 13, 1).

Considering the international documents related to the more general concept of donation, the World Health Organization [9] states in their Guiding Principle no. 5 that “The prohibition on sale or purchase of cells, tissues and organs does not preclude reimbursing reasonable and verifiable expenses incurred by the donor, including loss of income, or paying the costs of recovering, processing, preserving and supplying human cells, tissues or organs for transplantation.” [60], chapter VII, article 21, states that “The human body and its parts shall not, as such, give rise to financial gain or comparable advantage. The aforementioned provision shall not prevent payments which do not constitute a financial gain or a comparable advantage…”.

Several of these documents explicitly mention that the principle of voluntary and unpaid donations does not preclude reimbursing the donor for monetary costs incurred. They all generally stress; however, that payments should be strictly limited to reimbursing incurred expenses. Two words are worth noticing in the abovementioned guidelines: the inconvenience mentioned in [8] is, strictly speaking, a non-monetary loss. This can, however, be interpreted as the more general compensation for the time used on the donation (i.e. compensation for the next best use of the donor’s time, such as to work). For example, donors of sperm and oocytes receive a fixed monetary compensation for their inconvenience in several European countries. European Commission [61] give an overview of compensation practices for reproductive cell donations in Europe. Next, the comparable advantage mentioned in [60] precludes compensation that leaves the donor better off after the donation compared to before. Returning to Fig. 2, any use of incentives from payments or rewards is thus not accepted. In conclusion, it is generally not acceptable to compensate non-monetary losses by means of monetary payments. Note, however, that all of these documents treat the question of monetary compensation.

Appendix 3: The Intervention Ladder of the Nuffield Council on Bioethics

The Nuffield Council on Bioethics [54] recommends the use of an “intervention ladder” as a tool for assessing the ethical acceptability of interventions. It is emphasized that “the ladder should not be seen as moving from “ethical” actions to “unethical” actions, but rather from actions that are ethically straightforward to those that are ethically more complex” [54]. The rungs of the ladder are illustrated below.

Altruist focused

Rung 1: information about the need for the donation of bodily material for others’ treatment or for medical research

Rung 2: recognition of and gratitude for altruistic donation, through whatever methods are appropriate both to the form of donation and the donor concerned

Rung 3: interventions to remove barriers and disincentives to donation experienced by those disposed to donate

Rung 4: interventions as an extra prompt or encouragement for those already disposed to donate for altruistic reasons

Non-altruist focused

Rung 5: interventions offering associated benefits in kind to encourage those who would not otherwise have contemplated donating to consider doing so

Rung 6: financial incentives that leave the donor in a better financial position as a result of donating

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Platz, T.T., Siersbæk, N. & Østerdal, L.P. Ethically Acceptable Compensation for Living Donations of Organs, Tissues, and Cells: An Unexploited Potential?. Appl Health Econ Health Policy 17, 1–14 (2019). https://doi.org/10.1007/s40258-018-0421-7

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