A proposal to assess public opinion in Europe on compensation for organ donors

 Here's a paper that proposes doing an experiment. Concerning compensation for organ donors. In Europe.  With the hope of influencing policy and reducing the shortage of transplants.  (A very worthy cause, that brings to mind Titian's painting of Sisyphus...)

Ambagtsheer, Frederike, Eline Bunnik, Liset HM Pengel, Marlies EJ Reinders, Julio J. Elias, Nicola Lacetera, and Mario Macis. "Public Opinions on Removing Disincentives and Introducing Incentives for Organ Donation: Proposing a European Research Agenda." Transplant International 37 (2024): 12483.

Abstract: The shortage of organs for transplantations is increasing in Europe as well as globally. Many initiatives to the organ shortage, such as opt-out systems for deceased donation and expanding living donation, have been insufficient to meet the rising demand for organs. In recurrent discussions on how to reduce organ shortage, financial incentives and removal of disincentives, have been proposed to stimulate living organ donation and increase the pool of available donor organs. It is important to understand not only the ethical acceptability of (dis)incentives for organ donation, but also its societal acceptance. In this review, we propose a research agenda to help guide future empirical studies on public preferences in Europe towards the removal of disincentives and introduction of incentives for organ donation. We first present a systematic literature review on public opinions concerning (financial) (dis)incentives for organ donation in European countries. Next, we describe the results of a randomized survey experiment conducted in the United States. This experiment is crucial because it suggests that societal support for incentivizing organ donation depends on the specific features and institutional design of the proposed incentive scheme. We conclude by proposing this experiment’s framework as a blueprint for European research on this topic.

Organ trafficking, and how to reduce it -- Frederike Ambagtsheer in Conversation

Frederike Ambagtsheer, who studies illegal markets for organs and transplants,  has some sensible thoughts on how to combat organ trafficking, not least by increasing the availability of legal, ethical transplantation conducted in high quality hospitals.

Here she is in The Conversation:

Illegal organ trade is more sophisticated than one might think - who’s behind it and how it could be controlled  by Frederike Ambagtsheer

"The organ trade involves a variety of practices which range from excessive exploitation (trafficking) to voluntary, mutually agreed benefits (trade).

"These varieties warrant different, data-driven responses.

"For example, organ sellers are reluctant to report abuses because organ sales are criminalised and sellers will be held liable. Although many can be considered human trafficking victims and be offered protection, this rarely occurs. Law- and policymakers should therefore consider decriminalising organ sales (removing penalties in the law) and offer organ sellers protection, regardless of whether they agree to provide evidence that helps to dismantle criminal networks.

"Countries should also allow medical professionals to safely and anonymously report dubious transplant activity. This information can support the police and judiciary to investigate, disrupt and prosecute those who facilitate illegal organ transplants. Portugal and the UK already have successful organ trafficking reporting mechanisms in place.

"Finally, a contested example of a possible solution to reduce organ scarcity and avoid black market abuses is to allow payments or other types of rewards for deceased and living organ donation to increase organ donation rates. To test the efficacy and morality of these schemes, strictly controlled experiments would be needed.

...

" In short, rather than exclusively focusing on stricter laws, a broader range of responses is needed that both address the root causes of the problem and that help to disrupt organ trading networks."

***********

Here are all my posts that mention Dr. Ambagtsheer's work, which I've followed for more than a decade.

Two illegal (former) kidney transplant networks analyzed: the Netcare -and Medicus cases, by Ambagtsheer and Bugter

 There aren't many successful prosecutions resulting from illegal organ trafficking, despite the fact that the prevalence of illegal kidney transplants is estimated by many sources to be high.  Here's a paper that tries to understand the nature of the black market supply chain for kidneys, by examining two prosecutions that led to convictions, connected to a hospital in Kosovo and another in South Africa.

Ambagtsheer, F., Bugter, R. The organization of the human organ trade: a comparative crime script analysis. Crime, Law and Social Change (2022). https://doi.org/10.1007/s10611-022-10068-5

Abstract: "This study fills critical knowledge gaps into the organization of organ trade utilizing crime script analysis. Adopting a situational crime prevention approach, this article draws from law enforcement data to compare the crime commission process (activities, cast and locations) of 2 prosecuted organ trade cases: the Medicus case and the Netcare case. Both cases involved transnational criminal networks that performed kidney transplants from living donors. We further present similarities and differences between illegal and legal living donor kidney transplants that may help guide identification and disruption of illegal transplants. Our analysis reveal the similar crime trajectories of both criminal cases, in particular the extensive preparations and high degree of organization that were needed to execute the illegal transplants. Offenders in the illegal transplant schemes utilized the same opportunity structures that facilitate legal transplants, such as transplant units, hospitals and blood banks. Our results indicate that the trade is embedded within the transplant industry and intersects with the transport- and hospitality sector. The transplant industry in the studied cases was particularly found to provide the medical infrastructure needed to facilitate and sustain organ trade. When compared to legal transplants, the studied illegal transplant scripts reveal a wider diversity in recruitment tactics and concealment strategies and a higher diversity in locations for the pre-operative work-up of donors and recipients. The results suggest the need for a broader conceptualization of the organ trade that incorporates both organized crime and white collar crime perspectives."

***

"Although reliable figures of the trade’s scope are lacking, the World Health Organization (WHO) has estimated that approx. 5000 illegal transplants are performed annually (WHO, 2007). The organ trade is reported to rank in the top 5 of the world’s most lucrative international crimes with an estimated annual profit of $840 million to $1.7 billion (May, 2017). While illegal organ transplants have been reported to take place in countries across the globe, knowledge of the trade’s operational features remains scarce (Pascalev et al., 2016)

...

"At the time of writing, only 16 convictions involving organ trade have been reported to the case law database of the United Nations Office on Drugs and Crime, which is far less than would be expected based on global estimates of the problem (UNODC, 2022). The Organization for Security and Co-operation in Europe (OSCE) has reported 9 additional cases (OSCE, 2013). All reported cases had cross-border features and most involved the facilitation of living donor kidney transplants.

...

"In 2014 the Council of Europe established a new convention against ‘Trafficking in Human Organs’ which calls for a broad prohibition of virtually all commercial dealings in organs. Accordingly, sales that occur with the consent of donors are considered to be ‘trafficking’ regardless of the circumstances involved (Council of Europe, 2015)"

...

[Netcare]"Israeli and Romanian donors were promised $20,000 for their kidneys, the Brazilian donors were promised between $3,000 and $8,000. Most donors were recruited in Brazil by 2 retired military officers (Ambagtsheer, 2021; De Jong, 2017; Scheper-Hughes, 2011). 

Payments and reimbursements: Payments took place throughout all stages of the crime commission process. Patients paid Perry/his company up to $120,000 prior to their travel and transplant. Perry, and later also Meir, subsequently paid Netcare. Netcare in turn disbursed payments to various actors in the scheme, including the transplant surgeons and the blood bank. ... Occasionally, additional payments were made directly in cash to the surgeons by Perry, his company, or his agents. Perry also paid an escort/fixer (Rod Kimberley) and a nephrologist. Kimberley paid low-tier offenders in the scheme, including the interpreters. Kimberley additionally covered the costs of recipients’ and donors’ accommodations and he gave donors pocket money upon arrival in South Africa as an advance to their kidney payment. All donors received the promised amount in cash after their operations. 

...

"Contrary to donors in the Netcare case, none of the Medicus’ donors received the promised amount. Some did not receive payment at all but were promised payment only if they recruited new prospective kidney sellers. Withholding payments to kidney sellers in order for them to recruit new prospective kidney sellers is a tactic in organ trafficking schemes to sustain the transplant program (De Jong, 2017).

...

"The cases diverge with respect to the locations and legal embeddedness. Contrary to the Medicus case where transplants were organized in one clinic that was not licensed to conduct transplants, transplants in South Africa were facilitated in at least 5 hospitals across the country that were legally mandated to perform transplants."

Kidney exchange (including global kidney exchange), discussed at the European Society of Organ Transplantation meeting in Milan, Tuesday 29 June

 ESOT: The 20th Congress of the European Society of Organ Transplantation, meeting (by Zoom) in Milan, Italy (so the talks start at 9am pacific time, noon Eastern time in U.S., tomorrow)

Models of kidney exchange and chains

Tuesday 29 June 18:00 (CEST) 

18:00 – 18:12 Kidney exchange in UK Lisa Burnapp 

18:12 – 18:24 Kidney exchange in EU: where we are? Peter Biro

 18:24 – 18:36 Kidney exchange in US Michael Rees 

18:36 – 18:48 Ethical and legal issue in kidney exchange Frederike Ambagtsheer 

18:48– 19:00 Discussion Panellists 

19:00 Conclusions Nizam Mamode

Registration is free via https://us02web.zoom.us/webinar/register/WN_3sfBEFxnQleNoYezQvyjbg.

Global Kidney Exchange supported by the European Society of Transplantation's committee on Ethical, Legal, and Psychosocial Aspects of Transplantation .

Quite some time ago, the European Society for Organ Transplantation (ESOT) charged its committee on Ethical, Legal, and Psychosocial Aspects of Transplantation (ELPAT) with the task of evaluating those aspects of global kidney exchange (GKE). GKE had been greeted in some quarters with a number of dramatic accusations (e.g. that it was a form of organ trafficking), and the ELPAT committee tried to consider each of them.  Interestingly, the committee included members who I surmise started with a wide range of views, from cautious support to active hostility to GKE.

The final report, just published in Transplant International,  (which is the official journal of ESOT) is one that I think the committee can be proud of.  While you can tell that some committee members retain reservations about GKE, they nevertheless all agreed on a report that finds all of the principal objections raised against GKE to be unfounded.  Together with the even more clearly stated support for GKE in the Lancet, I think that this may mark a turning point: it certainly marks that GKE is receiving growing (and well deserved) support. 

Global Kidney Exchange: opportunity or exploitation? An ELPAT/ESOT appraisal
Frederike Ambagtsheer  Bernadette Haase‐Kromwijk  Frank J. M. F. Dor  Greg Moorlock  Franco Citterio  Thierry Berney  Emma K. Massey
Transplant International, September 2020, 33, 9, 989-998.    

https://onlinelibrary.wiley.com/doi/full/10.1111/tri.13630       Here's the pdf

"Summary: This paper addresses ethical, legal, and psychosocial aspects of Global Kidney Exchange (GKE). Concerns have been raised that GKE violates the nonpayment principle, exploits donors in low‐ and middle‐income countries, and detracts from the aim of self‐sufficiency. We review the arguments for and against GKE. We argue that while some concerns about GKE are justified based on the available evidence, others are speculative and do not apply exclusively to GKE but to living donation more generally. We posit that concerns can be mitigated by implementing safeguards, by developing minimum quality criteria and by establishing an international committee that independently monitors and evaluates GKE’s procedures and outcomes. Several questions remain however that warrant further clarification. What are the experiences and views of recipients and donors participating in GKE? Who manages the escrow funds that have been put in place for donor and recipients? What procedures and safeguards have been put in place to prevent corruption of these funds? What are the inclusion criteria for participating GKE centers? GKE provides opportunity to promote access to donation and transplantation but can only be conducted with the appropriate safeguards. Patients’ and donors’ voices are missing in this debate." 

Here's their introduction:

"In 2017, Rees et al. [1] introduced “Global Kidney Exchange” (GKE), an international kidney exchange program that facilitates cross‐border exchanges between immunologically incompatible donor–recipient pairs in high‐income countries (HIC) and biologically compatible but financially impoverished donor–recipient pairs in low‐ to middle‐income countries (LMIC). GKE aims to overcome immunologic barriers in the developed world and poverty barriers in the developing world. The underlying rationale is that financial barriers prevent transplantation much more frequently than organ scarcity. The number of patients dying annually worldwide from end‐stage kidney disease due to inadequate financial resources far exceeds the number of patients in developed countries placed on kidney transplantation waitlists [1-3]. GKE has the potential to expand the genetic diversity of the donor pool which may help to transplant difficult‐to‐transplant, highly immunized patients [1]."

As they debunk the main arguments that have been made against GKE, I thought that some of these remarks were among the most interesting:

"Removing financial barriers to organ donation is an internationally agreed objective, enshrined, among others, in the World Health Organization’s (WHO) Guiding Principles on Human Cell, Tissue and Organ Transplantation and in the CoE Convention [13, 15]. These organizations highlight that prohibition of organ payments does not preclude reimbursing expenses incurred by the donor, including the costs of medical procedures [13, 17]. Given that countries’ legislation vary in their approach to what constitutes illicit payment versus legitimate reimbursement, it is doubtful whether GKE violates the nonpayment principle under all circumstances. For example, the University of Minnesota’s legal team vetted GKE and agreed to proceed. Other hospital legal teams have followed suit [1]."

...

"“[e]xploitation occurs when someone takes advantage of a vulnerability in another person for their own benefit, creating a disparity in the benefits gained by the two parties” [9]. It is hard to see, however, that this description of exploitation can be readily applied to GKE. Primarily, it is not clear that there is a significant disparity in benefits between recipients. Each patient receives a kidney transplant, and as Minerva et al point out, benefits are arguably greater for LMIC recipients, who get the additional benefit of their follow‐up care being paid for [33]. The same is true for the donors, who each obtain the desired benefit of their intended beneficiary receiving a transplant. Rather than there being a morally troubling disparity in benefit, GKE appears to offer either roughly equal benefit, or greater benefit for those who are allegedly exploited."

"It is also unconvincing to consider GKE exploitative on other grounds. Rather than failing to protect the vulnerable, it seems that GKE addresses specific vulnerabilities by offering protection to those who are (i) vulnerable to death from kidney failure or (ii) vulnerable to losing a loved one due to kidney failure. It is similarly unconvincing to suggest that GKE treats people merely as a means to an end. Instead, one can see that participants in LMIC are respected as individuals, with measures put in place to protect their welfare and to ensure that their participation is voluntary."

...

The claim that donors and recipients in LMIC are too poor or vulnerable to voluntarily engage in GKE is also debatable and could be seen as paternalistic. First of all, the risk that voluntariness is undermined does not apply specifically to GKE or to LMIC alone, but applies to living donation more generally [35].

...

"The proclamation that countries have to be self‐sufficient was first declared by the 2008 DoI and the WHO [73, 74] and has rapidly gained momentum since [75-77]. The argument to ban GKE because of the need to achieve self‐sufficiency raises various implications however. First of all, it implies that the need for countries to become self‐sufficient is more important than the lives that can be immediately saved through GKE. Is achievement of self‐sufficiency so important that it overrides life‐saving alternatives? Who has the authority to decide which approach should get priority? Why is it required that countries become self‐sufficient in organ donation and transplantation, while it is universally accepted for countries to rely on global exchanges of all other types of goods and services?

 ***********************

The ESOT/ELPAT committee apparently operated under rules that prevented them from investigating some claims that required evidence, so they included some questions for us in their paper, which we answer in the comment that appeared in the same issue of TI. (For example, there was some confusion about what escrow meant in connection with the money provided for the foreign donor and recipient's medical expenses after their return home...)

In any event, the large number of co-authors to our comment (21!) is another expression of the broad and international support that GKE is achieving.

Global Kidney Exchange Should Expand Wisely
Alvin E. Roth  Ignazio R. Marino  Obi Ekwenna  Ty B. Dunn  Siegfredo R. Paloyo  Miguel Tan  Ricardo Correa‐Rotter  Christian S. Kuhr  Christopher L. Marsh  Jorge Ortiz  Giuliano Testa  Puneet Sindhwani  Dorry L. Segev  Jeffrey Rogers  Jeffrey D. Punch  Rachel C. Forbes  Michael A. Zimmerman  Matthew J. Ellis  Aparna Rege  Laura Basagoitia  Kimberly D. Krawiec  Michael A. Rees 

Transplant International, September 2020, 33, 9,  985-988. https://onlinelibrary.wiley.com/doi/full/10.1111/tri.13656   Here's a link to the pdf 

Here's the full first paragraph:

"We read with great interest and appreciation the careful consideration and analysis by Ambagtsheer et al. of the most critical ethical objections to Global Kidney Exchange (GKE). Ambagtsheer et al. conclude that implementation of GKE is a means to increase access to transplantation ethically and effectively.1,2 These conclusions by their European Society of Transplantation (ESOT) committee on Ethical, Legal and Psychological Aspects of Transplantation (ELPAT) represent a step forward toward a greater understanding and an open, honest debate about GKE. Taken together with the strong endorsement of GKE by Minerva et al. in Lancet  and the positive position statement of the American Society of Transplant Surgeons (ASTS), Ambagtsheer et al. successfully dispel previously raised doubts 5-13 to which we have previously responded .2,14-17"

************

Here are all my posts on global kidney exchange (GKE)

Black markets in organs in Egypt and Bangladesh

Dr.  Frederike Ambagtsheer  points me to the following papers. She is one of the coordinators of the HOTT project, Combating trafficking in persons for the purpose of organ removal.

Disqualified Bodies: A Sociolegal Analysis of the Organ Trade in Cairo, Egypt,  Law & Society Review, Volume 51, Number 2 (2017), by Seán Columb

Abstract: Legislative and policy interventions in response to the organ trade have centered on the introduction of criminal sanctions in an effort to deter organ sales
and/or “trafficking.” Yet, such measures fail to take account of the social and
political processes that facilitate the exploitation of individuals in organ markets
in different contexts. Informed by empirical data, gathered via a series of
in-depth interviews with Sudanese migrants who have sold a kidney, this
paper examines the link between increased urbanization, migration patterns,
informalization, and the emergence of organ markets in the Egyptian-
Sudanese context. The findings illustrate how processes of legal marginalization
and social exclusion leave people vulnerable to exploitation in organ markets.
The prevailing law enforcement response does not capture or respond
to the empirical reality. Accordingly, this paper shifts the emphasis away from
criminalization toward an analysis of the legal barriers and policy decisions
that shape the poor bargaining position of organ sellers. In doing so, it opens
up discussion of the organ trade onto wider critiques that disrupt boundaries
between formality and informality in labor markets and trouble dominant
modes of criminalization.
**********

EXCAVATING THE ORGAN TRADE: AN EMPIRICAL STUDY OF
ORGAN TRADING NETWORKS IN CAIRO, EGYPT, British Journal of Criminology, 2016, doi:10.1093/bjc/azw068
Seán Columb

Abstract
Legislative action in response to the organ trade has centred on the prohibition of organ sales and the enforcement of criminal sanctions targeting ‘trafficking’ offences. This paper argues that the existing law enforcement response is not only inadequate but harmful. The analysis is based on empirical data gathered in Cairo, Egypt, among members of the Sudanese population who have either sold or arranged for the sale of kidneys. The data suggest that prohibition has pushed the organ trade further underground increasing the role of organ brokers and reducing the bargaining position of organ sellers, leaving them exposed to greater levels of exploitation.
**********

And an opposite conclusion:

Against a Regulated Market in Human Organs: Ethical Arguments and EthnographicInsights from the Organ Trade in Bangladesh, Human Organization, Vol. 77, No. 4, 2018
Monir Moniruzzaman

Abstract: While organ transplantation is often highly successful in saving lives, it has created an illicit, but thriving, trade in human organs, including kidneys, livers, and corneas sourced from living bodies of the desperate poor. Based on challenging ethnographic fieldwork with seventy organ sellers, along with a group of recipients, brokers, and doctors, this article explains how organ trade results in violence, exploitation, and suffering against the vulnerable, who sell their live organs on the black market of Bangladesh. In opposition to allowing a “regulated organ market,” I argue that such a market is not a magic bullet that by itself would eliminate deception, coercion, and corruption that exist in the illegal trade of vital organs, nor would it ensure equity, rights, and justice to organ sellers. Instead, a regulated market would exacerbate, institutionalize, and normalize violence, exploitation, and suffering against impoverished populations. I, therefore, conclude that organ trade needs to be condemned, as there are alternative ways to resolve organ shortages. I suggest that government authorities must enact stringent laws, ensure ethical transparency, and encourage cadaveric donations to combat organ trafficking worldwide
********

Here are the earlier reports of the HOTT project.

Black market kidney transplants to UK patients? An inflammatory article in the Daily Mail

There seems to be good evidence that kidneys for transplantation are bought and sold in some parts of the world. However I'm not aware of any good data on how much of this trade involves people from wealthy countries, as opposed to internal commerce in less well resourced countries.

 Here's a scare headline from the British tabloid newspaper the Daily Mail:
REVEALED: Hundreds of Britons who buy KIDNEYS on the black market from overseas traffickers charging £30,000 in a bid to avoid NHS waiting lists are coming back with deadly diseases such as HIV and hepatitis

It turns out that the "hundreds"  in the National Health Service data are 400, over a period of 16 years, which averages out to 25 Britons a year.

"Around three million Britons have chronic kidney disease, with the biggest causes uncontrolled diabetes and high blood pressure. It contributes to 45,000 early deaths every year.

NHS figures show almost 400 UK residents have received follow-up support after a transplant abroad over the past 16 years. But medics say the true number is likely to be higher because most are advised by brokers not to tell the NHS what they have done."

I don't know what kinds of health data the NHS collect, but in principle it would be easy to track all patients who return to the UK with a transplant from overseas, because such patients immediately need to get prescriptions for daily immunosuppressive drugs. (However I don't think we track these data in a centralized way in the U.S.)


HT Frank McCormick
***********
Here some of what I've gleaned in the past:

Monday, December 17, 2018 

Australia's parliament reports on organ trafficking

Australia's parliament has published a report on organ trafficking in Australia. They didn't find much trafficking there, but recommend that data be more vigorously collected. They report that only one case of (attempted) paid organ donation has come to the attention of the authorities, but that it was successfully prevented, and the intended recipient died. The report ends with a case study of an anatomical exhibit using human cadavers.

Wednesday, October 4, 2017 

Kidney black markets are persistent

Black markets in kidneys--like those for narcotic drugs--have resisted attempts to abolish them.

Sunday, September 17, 2017

Yemenis selling kidneys in Egypt: Al Jazeera

Al Jazeera has the (nuanced) story:
Desperate Yemenis sell organs to survive

Sunday, January 15, 2017

Egypt arrests 'organ trafficking ring'

The BBC has the story: Egypt arrests 'organ trafficking ring'
Egyptian authorities have arrested doctors, nurses and professors suspected of being involved in an international organ trafficking ring.

Black markets for kidney transplants--arrests in Israel

A late December story of black markets and law enforcement from the Times of Israel:
2 charged with running international organ traffic ring. Patients allegedly paid $180,000 for a kidney; illegal transplants carried out in Turkey, Bulgaria, Thailand, Philippines

"In the last two years, the ring reportedly arranged for 14 transplants in four countries; Turkey, Bulgaria, Thailand and Philippines"

Saturday, October 8, 2016

More on kidney black markets in India

Top Indian Hospital Complicit In Lucrative Black Market for Human Organs

Friday, August 19, 2016

Interview with a kidney buyer and seller in Syria

Here's an interview with a displaced person in Syria (an internal refugee) and the Syrian woman to whom he sold his kidney:
The woman in need of a kidney and the man willing to sell one to her: ‘I’m at the end of the line’

Tuesday, June 21, 2016

Kidney black market arrests at Apollo hospital in Delhi

Wednesday, June 8, 2016

On Patients Who Purchase Organ Transplants Abroad--Many or few?

An article in the American Journal of Transplantation:
On Patients Who Purchase Organ Transplants Abroad
by F. Ambagtsheer,*, J. de Jong,W. M. Bramer and W. Weimar

"We conclude that the scientific literature does not reflect a large number of patients buying organs. Organ purchases were more often assumed than determined. A reporting code for transplant professionals to report organ trafficking networks is a potential strategy to collect and quantify cases."

On Patients Who Purchase Organ Transplants Abroad--Many or few?

An article in the American Journal of Transplantation:

On Patients Who Purchase Organ Transplants Abroad
by F. Ambagtsheer,*, J. de Jong,W. M. Bramer and W. Weimar

The international transplant community portrays organ trade as a growing and serious crime involving large numbers of traveling patients who purchase organs. We present a systematic review about the published number of patients who purchased organs. With this information, we discuss whether the scientific literature reflects a substantial practice of organ purchase. Between 2000 and 2015, 86 studies were published. Seventy-six of these presented patients who traveled and 42 stated that the transplants were commercial. Only 11 studies reported that patients paid, and eight described to what or whom patients paid. In total, during a period of 42 years, 6002 patients have been reported to travel for transplantation. Of these, only 1238 were reported to have paid for their transplants. An additional unknown number of patients paid for their transplants in their native countries. We conclude that the scientific literature does not reflect a large number of patients buying organs. Organ purchases were more often assumed than determined. A reporting code for transplant professionals to report organ trafficking networks is a potential strategy to collect and quantify cases.
++++++++

Update: here's the published version...
Volume 16, Issue 10, October 2016, Pages 2800–2815

Compensation for kidney donors: once again under discussion

The American Journal of Transplantation published the following article, by a large group of authors called the Working Group on Incentives for Living Donation:
"Incentives for Organ Donation: Proposed Standards for an Internationally Acceptable System"
Volume 12, Issue 2, pages 306–312, February 2012

Some idea of the content of their recommendations can be gotten from the following Table:

Table 2.  Guidelines for development of a regulated system of incentives for deceased and living donation

(1) Each country implementing a system of incentives should have a legal and regulatory framework for the process.

(2) The entire process must be transparent and subject to government and international oversight.

(3) The incentive should be provided by the state or state-recognized third party. Under well-defined, transparent and regulated circumstances, prospective recipients may help fund a charity that supports the program. There is no direct payment from the recipient to the donor and supporting the charity will not result in advancement on the waiting list.

(4) Allocation of the organ(s) should be performed according to the single recognized system of that country (similar to UNOS in the United States) using a predefined and transparent algorithm so that everyone on the list has an opportunity to be transplanted. Kidneys would be allocated to the number 1 person on the list (as determined by defined and transparent criteria).

(5) There should be a plan for administration and for rigorous oversight to ensure that criteria for evaluation, acceptance, allocation and provision of the incentive to the donor (or donor family) are being followed.

(6) The donation should be anonymous and nondirected.

(7) No other solid organ donor incentive plan would be legal.

(8) There should be legislation to govern wrongdoing and how centers would be censured, including criminal sanctions and fines, if wrongdoing is identified.

The  article drew the following replies in the Letters to the Editor

“Proposed Standards for Incentivesfor Organs Donation” Are Neither International nor Acceptable

F. Delmonico, G. Danovitch, A. Capron, A. Levin and J. Chapman, Council, Declaration of Istanbul Custodian Group, Montreal, QUE, Canada

The Philippines Is Not the Site forIncentivized Organ Donation

B. Padilla, D. Bayog, N. L. Uy, I. Gueco, L. Nazareno-Rosales, A. Chua, L. Almazan-Gomez, D. Bonzon, B. Balmores and E. Cabral

"The report on the proposed “international standards” for financial incentives for organ donation in the February issue of the AJT (1), stated that “until there are trials, we have no means of knowing under precisely what circumstances such a proposal would best succeed”. Permit us to report that a regulated system of incentives for living organ donors was already implemented in the Philippines from 2002 to 2008. The program offered a sizable “gratuity package” while mandating systems and procedures for transparency, creation of ethical guidelines, monitoring of transplant facilities and a donor registry, much like what this article proposes. The reality was different from the intended outcomes. The black market was not eliminated and organ brokers continued to be involved (Roberto Tanchanco et al., unpublished cohort study, 2011) (2). A regulation that transplants to foreigners should comprise no more than 10% of total transplants proved unenforceable and transplant tourism flourished (3). Donors were not protected, as there was failure of informed consent, lack of economic improvement in the donors’ lives and poor rate of medical follow-up (Roberto Tanchanco et al., unpublished cohort study, 2011) (2). A study limited to the donors within the government-regulated program reported better economic outcomes, but this was hardly convincing as poor follow-up allowed reporting of data in only 81 of 164 participants (Romina Danguilan et al., unpublished cross-sectional study, 2010).

Thus, our experience leads us to believe that the Matas article underestimates the problems related to the approach they recommend. A system of incentives for living unrelated donors which is difficult to differentiate from a disguised organ market is totally inappropriate for a country like the Philippines, where many patients have a potential related donor but cannot afford to pay for a transplant, where the deceased donor program is still very infantile, where the poor have been exploited in organ trafficking before and a large sector of the population remains vulnerable."


A Realistic Proposal—Incentives MayIncrease Donation—We Need Trials Now!

A. Matas, J.A.E. Ambagtsheer, R. Gaston, T. Gutmann, B. Hippen, S. Munn, E. T. Ona, J. Radcliffe-Richards, A. Reed, S. Satel, W. Weimar and R. Danguilan

"To the Editor:

The shortage of organs is a critical problem for patients with organ failure, and has led to a polarizing discussion. Some, including us, have suggested that a regulated system of incentives might increase donation and alleviate the crisis (1,2). Others, championed by Chapman, Danovitch, Padilla and Delmonico, have passionately opposed this option (3–6).

Delmonico et al., representing the Declaration of Istanbul [DoI] Custodial Group (DICG) now write that our proposed guidelines for a regulated system are not acceptable (4). Our proposal, as stated in the manuscript, was presented as a basis for discussion (7). Rather than suggesting modifications or improvements, the DICG simply condemns it.

Their condemnation rests on two arguments. First, that others have suggested that “sales,”“brokering” and “organ markets” are wrong, and that we have “departed from the consensus.” Yet we clearly state our opposition to exploitation and unregulated markets, and instead suggest a government-regulated system with explicit limits to prevent the abuses all parties decry. But even the supposition that we have no right to challenge “the consensus” is suspect. When, in moral debate, is majority opinion the final argument? If it were, homosexuals would still be criminals and women still subordinate to their husbands and excluded from public life–both once widely held majority views enshrined by law.

And where does this so-called consensus come from? The DICG refers to the World Health Organization (WHO) and the DoI. Yet, the WHO has updated its Guiding Principles (most recently supporting reimbursement of costs and of emotionally or legally related donors vs. previous stance banning all but genetically related donors and any payment). The draft of the DoI was written by a Steering Committee including Chapman and Delmonico, but no proponent of incentives (8). The summit was by invitation only, and invitees were invited based on their stance on this issue (Danovitch, personal communication). The few proponents of incentives were vastly, and vociferously, outnumbered. Why are these “consensus” documents immune from challenge?

Second, the DICG is incorrect that our proposal is “belied by the reality of markets.” Again, they conflate “unregulated markets” with the government sponsored regulated systems we propose. As we state: (a) each system would be limited (donors and recipients) to citizens of that country, and (b) the organ would be allocated to the #1 person on the list (i.e. not the rich buying from the poor). Each government-regulated system would be based on donor and recipient protection, regulation, transparency and oversight.

Finally, we resent the innuendo in the suggestions that our manuscript was prompted and “funded in part by Filipino organizations that have favored organ sales to foreigners” and that the authors would accept “permitting the poor and vulnerable in any community to part with a kidney for the wealthy sick.” These are cheap shots unworthy of a discussion so important to our patients. It may be that there is no place for a regulated system of incentives. But that decision should be made after dispassionate, reasoned discussion and ideally after being informed by hard data.

In a second letter, Padilla (another member of DICG) et al., suggest that our proposed system would not work in the Philippines (6). We recognize that there have been mixed evaluations of the programs implemented in both the Philippines and Iran (9). However, neither system of incentives meets the guidelines we have proposed. Moreover, the very fact that successes have been reported suggests that the systems could indeed work and should be improved upon rather than abandoned. We did not state that our system would work in every country, but presented guidelines detailing how systems should be designed in order to be acceptable. Each country would need to have appropriate regulation and oversight and to be able to address wrongdoing."

Compensation for donors, organ trafficking, and the Declaration of Istanbul

The American Journal of Transplantation publishes an article suggesting that organ trafficking can only be effectively ended by ending the shortage of organs, which will involve careful trials of incentives for donors.  It also publishes an editorial disagreeing with this proposal, and saying that enforcement of laws against trafficking depend on a ban on compensation to donors.

The March 2012 issue of
American Journal
of Transplantation

A Criminological Perspective: Why Prohibition of Organ Trade Is Not Effective and How the Declaration of Istanbul Can Move Forward

F. Ambagtsheer and W. Weimar
This personal viewpoint expresses the opinion of the authors on how prohibition of organ trade can be improved. See editorial by Glazier and Delmonico on page 515.

The Declaration of Istanbul Is Moving Forward by Combating Transplant Commercialism and Trafficking and by Promoting Organ Donation

A. K. Glazier and F. L. Delmonico
The authors provide a critical response to the viewpoint by Ambagtsheer and Weimar (page 571) regarding the Declaration of Istanbul and its stance toward transplant commercialism, organ trafficking and donation.