Why is achieving financial neutrality in organ donation so hard?

For some years now, many opponents of compensation for kidney donors have come to agree that at least donors should not have to bear large expenses to donate.  But it has been hard to operationalize this apparent agreement.

Here's a paper that (somewhat inadvertently) explains why.  They take the position that it is ethically allowable to compensate donors for out of pocket financial expenses, but ethically forbidden to do so in a way that might  sometime pay some donor for an expense  they might have incurred even if they hadn't donated. (So, for example, they forbid paying anything towards funeral expenses for deceased donors.)

This was a point of view that I encountered when I was on the advisory board of NLDAC, the federally funded U.S. agency that can pay some expenses for poor donors. Originally NLDAC issued special credit cards to donors who qualified, that could only be used for airfare, hotels, and restaurants, i.e. for travel and meals.  But some donors indicated that they preferred not to eat in restaurants, but to go to a supermarket and bring food back to eat in their hotel room.  NALDAC eventually decided that the special credit card could also be used for grocery stores, even though this meant that some donor might sometime buy a dozen apples, and bring the uneaten ones with them when they returned home, and thus have received some compensation in addition their travel expenses. (When I write it like that it seems that I must be exaggerating, but here's an article that argues that any inadvertent generosity to donors would cross a red line, and must therefore be avoided.)

Supporting Financial Neutrality in Donation of Organs, Cells, and Tissues, by Martin, Dominique E. PhD1; Capron, Alexander M. LLB2; Fadhil, Riadh A. S. MD3; Forsythe, John L. R. MD4; Padilla, Benita MD5; Pérez-Blanco, Alicia PhD6; Van Assche, Kristof PhD7; Bengochea, Milka MD8; Cervantes, Lilia MD9; Forsberg, Anna PhD10; Gracious, Noble MD11; Herson, Marisa R. PhD1; Kazancioğlu, Rümeyza MD12; Müller, Thomas PhD13; Noël, Luc MD14; Trias, Esteve MD15; López-Fraga, Marta PhD16,
Transplantation 109(1):p 48-59, January 2025. | DOI: 10.1097/TP.0000000000005197 

Abstract: "The avoidance of financial gain in the human body is an international ethical standard that underpins efforts to promote equity in donation and transplantation and to avoid the exploitation of vulnerable populations. The avoidance of financial loss due to donation of organs, tissues, and cells is also now recognized as an ethical imperative that fosters equity in donation and transplantation and supports the well-being of donors and their families. Nevertheless, there has been little progress in achieving financial neutrality in donations in most countries. We present here the findings of an international ethics working group convened in preparation for the 2023 Global Summit on Convergence in Transplantation, held in Santander, Spain, which was tasked with formulating recommendations for action to promote financial neutrality in donation. In particular, we discuss the potential difficulty of distinguishing interventions that address donation-related costs from those that may act as a financial incentive for donation, which may inhibit efforts to cover costs. We also outline some practical strategies to assist governments in designing, implementing, and evaluating policies and programs to support progress toward financial neutrality in donation."

" The principle of financial neutrality in donation states that donors of organs, cells, and tissues, or donor families, should neither lose nor gain financially as a result of donation.

...

"we explore concerns regarding the use of financial incentives for donation (see Box 1) and discuss potential difficulties in distinguishing legitimate coverage of costs from practices and policies that may provide financial incentives for donation and thus violate the prohibition of trade in SoHOs. We argue that anxiety regarding the use of financial incentives may, in some countries, deter or undermine efforts to remove financial disincentives from donations. 

...

"Efforts to address the costs of living kidney donation notably became a focus in North America in the wake of a decline in living donor rates in the mid-2000s, disproportionately impacting poorer populations.

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" Like the removal of financial disincentives to donation, avoidance of financial incentives for donation is essential for achieving financial neutrality ... "Sustained efforts are thus needed to deter use of financial incentives and ensure that efforts to promote financial neutrality in donation do not create actual or perceived incentives

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"Some proposals intended only to cover donation-related costs may inadvertently incentivize donations or result in inappropriate financial gains.

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"After more than a decade of expressed support for the principle of financial neutrality in donation, it is time for policymakers in all countries to act in pursuit of the goal of financial neutrality."

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Earlier: Thursday, March 31, 2022  National Living Donor Assistance Center (NLDAC) support for lost wages and dependent care