Kidney transplant black market in Myanmar

 BBC Burma has the story (I guess they haven't updated their country name...no doubt they still refer to the Gulf of Mexico, too:) 

The story is about Burmese people purchasing a kidney from other Burmese people, after which they both travel to India for the surgeries, which involves pretending to be relatives.

Myanmar villagers reveal 'desperate' illegal kidney sales, BBC Burmese 

"Zeya, whose name has been changed to conceal his identity, knew of local people who had sold one of their kidneys. "They looked healthy to me," he says. So he started asking around.

"He is one of eight people in the area who told BBC Burmese they had sold a kidney by travelling to India.

...

"Buying or selling human organs is illegal in both Myanmar and India, but Zeya says he soon found a man he describes as a "broker".

"He says the man arranged medical tests and, a few weeks later, told him a potential recipient - a Burmese woman - had been found, and that both of them could travel to India for the surgery.

"In India, if the donor and recipient are not close relatives, they must demonstrate that the motive is altruistic and explain the relationship between them.

...

"He says the broker made it appear as if he was donating to someone he was related to by marriage: "Someone who is not a blood relative, but a distant relative".

...

Zeya says he was told he would receive 7.5m Myanmar kyats. This has been worth somewhere between $1,700 and $2,700 over the past couple of years

...

" he flew to northern India for the operation and it took place in a large hospital. ... he stayed in hospital for a week afterwards.

...

"The BBC last heard from Zeya several months after his surgery.

"I was able to settle my debts and bought a plot of land," he said.

But he said he couldn't afford to build a house and had not been able to construct one while recovering from the surgery. He said he had been suffering from back pain.

"I have to restart working soon. If the side effects strike again, I have to deal with it. I have no regrets about it," he added.

He said he stayed in touch with the recipient for a while, and she had told him she was in good health with his kidney.

Speaking on condition of anonymity, she told the BBC she paid 100m kyats (between around $22,000 and $35,000 in recent years) in total. She denied that documents were forged, maintaining that Zeya was her relative."

 

HT: Colin Rowat

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Earlier, also on the Myanmar/India black market

Thursday, December 21, 2023

Cash for kidneys report in the Telegraph

Kidneys, compensation, and altruistic activists

 Here's a well written story about kidney donation, and  some of the very interesting people involved in the debate over compensating donors.  It's written by the talented science writer Carrie Arnold, in  Noema magazine (which she described to me as "a pub that has a philosophical bent published by the Berggruen Foundation," when I was among the many people she interviewed for the story). 

 It starts by introducing us to non-directed donors like Elaine Perlman and her son Abie Rohrig (he donated first and she followed). Elaine is now a leader in promoting organ donation and compensation of donors, not least through the End Kidney Deaths Act.   We also meet the indefatigable Frank McCormick, an economist at the forefront of understanding the finances of transplantation (and how much money it saves society and the healthcare system compared to dialysis).

 Here's the story:

How Much Is Your Kidney Worth? To address the deadly organ shortage, some are proposing compensating living kidney donors, creating an ethical dilemma.  By Carrie Arnold , in Noema, February 13, 2025

Ms. Arnold gives me the last word. The very last line of the story concerns the End Kidney Deaths Act:

“This is a proposal that just says donors are really generous,” Roth said, “maybe we can be generous to them in return.”

Informed consent and compensation for clinical trial participants (Ambuehl, Ockenfels and Stewart in REStat)

 Here's the latest in a series of papers that suggests that participants who are attracted to e.g. clinical trials by the pay may be those who have the most trouble evaluating the costs and risks. So high pay should be paired with robust procedures for informed consent.

Ambuehl, Sandro, Axel Ockenfels, and Colin Stewart. "Who opts in? Composition effects and disappointment from participation payments." Review of Economics and Statistics 107, no. 1 (2025): 78-94.

Abstract: "Participation payments are used in many transactions about which people know little but can learn more: incentives for medical trial participation, signing bonuses for job applicants, or price rebates on consumer durables. Who opts into the transaction when given such incentives? We theoretically and experimentally identify a composition effect whereby incentives disproportionately increase participation among those for whom learning is harder. Moreover, these individuals use less information to decide whether to participate, which makes disappointment more likely. The learning-based composition effect is stronger in settings in which information acquisition is more difficult. 

"we contribute to the burgeoning literature on the moral constraints on markets (Kahneman et al., 1986; Roth, 2007; Ambuehl et al., 2015; Ambuehl, 2022; Elias et al., 2019). Around the world, the principles of informed consent are fundamental to regulations concerning human research participation, as well as to transactions such as human egg donation, organ donation, and gestational surrogacy (DHEW 1978, The Belmont Report, 1978; Faden & Beauchamp, 1986). According to these principles, the decision to participate in a transaction is ethically sound if it is made not only voluntarily but also in light of all relevant information, properly comprehended.3 Our results show that payments for participation can be in conflict with participants’ understanding about the consequences of participation. They further show that the severity of this conflict grows with respect to both the amount of the payment and the difficulty of acquiring and processing information about the consequences of the transaction."

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Earlier:

Wednesday, September 4, 2024 Incentives matter for getting participation in clinical trials by low income households

 

Sunday, March 10, 2024 Does high pay equal "undue inducement"? An experiment by Sandro Ambuehl

 

 

The debate over compensating organ donors is heating up

  It's a new year, and maybe there will be progress in increasing organ donation.  Here's a video in which Elaine Perlman explains the End Kidney Deaths Act, which might be debated by Congress this year, and would be an attempt to increase living donation by allowing some compensation (in the form of tax credits) for kidney donation.  And there are  a slew of articles in medical journals (of which I sample two) saying that the first and most important rule of organ transplantation is that donors should not be compensated (and that the same goes for other SoHOs (Substances of Human Origin) such as blood plasma. 

 

"Passing the End Kidney Deaths Act isn’t just an ethical decision—it’s a practical solution to one of the most pressing public health challenges in America.
100,000 Americans are counting on us to get the End Kidney Deaths Act to the finish line. The choice is clear and 2025 is our year. Let’s contact Congress now to pass the End Kidney Deaths Act and ensure a future where no one dies while waiting for a kidney. Because saving lives is not only ethical—it’s our responsibility."

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And here are two articles reaffirming their opposition:

Promoting Equitable and Affordable Patient Access to Safe and Effective Innovations in Donation and Transplantation of Substances of Human Origin and Derived Therapies
Cuende, Natividad MD, MPH, PhD1; Tullius, Stefan G. MD, PhD2; Izeta, Ander PhD3; Plattner, Verena PhD4; Börgel, MSc, Martin5; Ciccocioppo, Rachele MD6; Correa-Rocha, Rafael PhD7; Koh, Mickey B. C. MD, PhD8,9; De Angelis, Vincenzo MD10; Gondolesi, Gabriel E. MD, MAAC11; ten Ham, Renske PhD, PharmD12; Porte, Robert J. MD, PhD13; Hernández-Maraver, Dolores MD, PhD14; Hawthorne, Wayne J. MD, PhD15; Sureda, Anna MD, PhD16; Orlando, Giuseppe MD, PhD17; Haraldsson, Börje MD, PhD18; Ascher, Nancy L. MD, PhD19; Dominguez-Gil, Beatriz MD, PhD14; Oniscu, Gabriel C. MBChB, MD20
Author Information
Transplantation 109(1):p 36-47, January 2025. | DOI: 10.1097/TP.0000000000005169

 Note which ethical principle is at the top of the list.

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And this report speaks of global kidney exchange, but not for the poor...

 Expanding Opportunities for Living Donation: Recommendations From the 2023 Santander Summit to Ensure Donor Protections, Informed Decision Making, and Equitable Access, by
Lentine, Krista L. MD, PhD1; Waterman, Amy D. PhD2; Cooper, Matthew MD3; Nagral, Sanjay MS, FACS4; Gardiner, Dale MD5; Spiro, Michael MBBS6; Rela, Mohamed MS, FRCS, DSc7; Danovitch, Gabriel MD8; Watson, Christopher J. E. MD9; Thomson, David MD10; Van Assche, Kristof PhD11; Torres, Martín MD, MS12; Domínguez-Gil, Beatriz MD, PhD13; Delmonico, Francis L. MD14;  On behalf of the Donation Workgroup Collaborators*
Transplantation 109(1):p 22-35, January 2025. | DOI: 10.1097/TP.0000000000005124

 

"International KPE is acceptable if the donor-recipient pairs belong to a similar sociodemographic reality and are properly covered and protected by healthcare systems. GKE that exploits financial inequalities between pairs (or countries) must be prohibited."