Is it time to compensate kidney donors?

Tina Rosenberg in the NY Times thinks it is: It’s Time to Compensate Kidney Donors

"Still, a debate is beginning to emerge. In the United States, some prominent kidney doctors believe we might learn something from Iran. “My journey was from ‘this is all immoral and we shouldn’t think about it’ to the other side,” said Robert Gaston, executive co-director of the Comprehensive Transplant Institute at the University of Alabama at Birmingham, and a recent past president of the American Society of Transplantation, one of two American organizations of transplant doctors. “Iran’s program can’t be termed a universal success. But it is a reasonable approach, a transparent, ethical way to address kidney disease in the population there.”

While no country seems willing to follow Iran into providing monetary incentives for kidney donors, many are starting to remove the financial disincentives that make donating a kidney an activity only for those with disposable income."

Iran's market for kidneys in the NY Times

Tina Rosenberg writes about the Iranian kidney market: Need a Kidney? Not Iranian? You’ll Wait.

Here's a part:

"Iran’s system has many deficiencies — not least that the very idea clashes with ethical norms observed in many other countries — and the program varies greatly from region to region. But its chief advantage is this: People who need kidneys get them rapidly, rather than die on the waiting list.

In the vast majority of cases, donors know in advance what they will be paid and receive appropriate screening and good medical care before and during the operation. And by getting patients new kidneys instead of keeping them on dialysis, the society saves a lot of money and avoids much misery.

The Iranian model suffers from insufficient funding, lack of follow-up for donors and other problems. But as waiting lists for kidneys grow around the world, Iran offers an important lesson: With good design and regulation, a system that pays donors need not be exploitative or immoral. In Iran, the legal kidney market has prevented the development of the abusive black markets and kidney tourism seen in other countries. As the kidney crisis intensifies, governments should look closely at what Iran has achieved.

For many people, the specifics of how a kidney market works are beside the point — the very idea of paying people to donate organs ends the debate before it starts.

One reason the idea of organ-selling is repugnant is that the human body has a special dignity. But if there’s an ethical barrier to selling the pieces, it was crossed long ago. We sell blood products, sperm and eggs. We pay people to do weird things to their bodies in risky clinical trials.

Perhaps kidney donation is different because kidneys do not grow back (although one healthy kidney is sufficient), and donation requires surgery. It is very safe surgery, but there is always some risk for donors. Perhaps the biggest moral issue in economically unequal societies is that a paid donor is almost always in dire straits, willing to do desperate things for money.

Yet people, especially poor people, take risks for money all the time. “We should ask ourselves why some people find accepting money to donate a kidney and save a life repugnant, but accepting money for being a policeman or miner or soldier — all of which are statistically riskier than donating a kidney — is O.K.,” said Mohammad Akbarpour, a research fellow in the Becker-Friedman Institute of the University of Chicago. “Is there a fundamental difference?”

Do pricing guidelines for human eggs violate antitrust laws?

The WSJ has the story:
Putting a Price on a Human Egg
Lawsuit claims price guidelines used by fertility clinics artificially suppress the amount women can get for their eggs

"How much is a human egg worth? The question is at the heart of a federal lawsuit brought by two women who provided eggs to couples struggling with infertility.

The women claim the price guidelines adopted by fertility clinics nationwide have artificially suppressed the amount they can get for their eggs, in violation of federal antitrust laws.

The industry groups behind the price guidance—which discourages payments above $10,000 per egg-donation cycle—say caps are needed to prevent coercion and exploitation in the egg-donation process.

But the plaintiffs say the guidelines amount to an illegal conspiracy to set prices in violation of antitrust laws. The conspiracy, they argue in court papers, has deprived women nationwide a free market in which to sell their eggs, and enabled fertility clinics to “reap anticompetitive profits for themselves.”

“It’s naked, illegal price-fixing,” said Michael McLellan, a lawyer for the women.
...

...
"Other egg donors say a robust market depends on compensation. “I helped couples achieve their dreams, and in return they helped me go to law school, buy an apartment, pursue my dreams when I was in my 20s,” said Gina-Marie Madow, a four-time egg donor now working as a lawyer at Circle Egg Donation, a Boston-based egg-donation agency. Ms. Madow said $10,000 “feels like the right amount for women to get” for a cycle but didn’t understand the reason behind the price cap. “I just don’t think the [organizations have] done a good job explaining why it exists,” she said.

The price caps might also guard against worries that women might pay more for eggs from mothers of certain ethnic or racial backgrounds, or with such traits as physical beauty or high intelligence. Such a market exists, largely through a small number of agencies that cater to couples willing to pay a premium.

“It’s a concern about eugenics, that women will pay more for eggs from an Ivy League grad,” said John Robertson, a professor of law and bioethics at the University of Texas.

Kimberly Krawiec, a law professor at Duke University who has studied the egg-donor industry, played down such concerns, adding that mothers-to-be generally aren’t looking to build a genetically superior child. Ms. Krawiec said she had little issue with couples paying more for eggs from women with, say, high SAT scores. “Fertile people have been screening for beauty and intelligence for years and years,” she said. “It’s called dating.”

Journal of Human Trafficking, Issue 1, 2015, on kidneys

Issue 1 of the Journal of Human Trafficking contains this article by Alexander Capron and Frank Delmonico. I've highlighted in the abstract two points worth noting--the first involves some untested, but testable empirical claims about what would happen if countries in the first world allowed compensation for donors. (It would be nice to have some empirical evidence...)  The second point is that it is now agreed by everyone that financial disincentives for donating should be removed. (Let's get organized on that, shall we?)

Preventing Trafficking in Organs for Transplantation: An Important Facet of the Fight Against Human Trafficking

DOI:10.1080/23322705.2015.1011491

Alexander M. Caprona & Francis L. Delmonico

pages 56-64

Published online: 28 Apr 2015

Abstract

Most countries now have national legislation that outlaws both human trafficking and organ trafficking. However, international conventions and domestic laws alone have not been enough to stop the trade in organs. As of 2007, a conservative estimate was that 5% of the approximately 100,000 organs transplanted annually were derived from exploiting the poorest and most vulnerable people in society; anti-trafficking efforts have since reduced, though not eliminated, this practice. The Declaration of Istanbul (DoI) was created in 2008 to engage medical professional societies to collaborate with governments and others in combating organ sales, transplant tourism, and trafficking in human organs. In 2010, the Declaration of Istanbul Custodian Group (DICG) was formed to actively promote and to monitor the implementation of the DoI principles. The removal of prohibitions on organ purchases, which is now being promoted in some wealthy nations, is unlikely to shorten transplant waitlists (because organ sales crowd out voluntary, unpaid donation) and would be based on the false view that such sales do not exploit the sellers. To combat such exploitation, the DICG advocates for ratification and enforcement of the new “Council of Europe Convention against Trafficking in Human Organs,” as a complement the Palermo Protocol to the United Nations organized crime convention that prohibits human trafficking for organ removal. To increase ethical organ donation by living related donors, the DICG encourages countries to adopt means to cover donors’ financial costs, which now discourage donation. It also works with the World Health Organization to encourage ministries of health to develop deceased donation to its maximum potential toward the goal of achieving national self-sufficiency in organ transplantation so that patients do not need to travel to foreign destinations to undergo organ transplantation using kidneys and partial livers purchased from poor and vulnerable people. Success in combating human trafficking for organ removal and organ trafficking will be greatly enhanced through organizations like the DICG forging strong relationships with human rights organizations.

Financial support for organ donors in New Zealand? A new bill proposed...

New Zealand's parliament will debate a bill to increase the financial support offered to organ donors.

Member’s Bill will boost financial support for organ donors Thursday, 25 June 2015, 2:43 pm Press Release: New Zealand National Party

Chris Bishop

National List MP based in the Hutt Valley

25 June 2015

Member’s Bill will boost financial support for organ donors

Chris Bishop, National List MP based in the Hutt Valley, is delighted the Financial Assistance For Live Organ Donors Bill, a Member’s Bill in his name, has been drawn from the ballot and will be debated by Parliament.

The purpose of the Bill is to increase the financial assistance provided to people who, for altruistic reasons, donate kidney or liver tissue for transplantation purposes.

The Bill will increase the support for donors from the equivalent of the sickness benefit to the equivalent of 80 per cent of the donor’s pre-operation earnings – the same formula applied to income support for ACC recipients. The Bill also provides for the payment of childcare assistance for those who require it during their convalescence.

“I was inspired to pick up this Member’s Bill, which was originally put forward by Hon Michael Woodhouse, after talking to Sharon van der Gulik at one of my first meetings as a candidate in the election last year,” Mr Bishop says. “She had been living with renal failure for more than two years and needed 15 hours of dialysis a week – before her son donated one of his kidneys to her.

“At the public meeting, Mrs van der Gulik spoke of the financial hardship that her son faced in the six weeks he spent recovering from the procedure. She argued he deserved more. I agree.

“If this Bill passes into law, greater support will be available to people like Mrs van der Gulik’s son.

“Organ donation rates in New Zealand are improving, but are still too low. It’s important they increase - live kidney donation is the least expensive form of treatment for end-stage renal failure, and significantly improves life expectancy.

“This Bill is a small but important and helpful step to increasing the number of people who donate organs.

“Wider work to increase the number of donors is being led by the Minister of Health. Budget 2014 allocated $4 million over four years to set up a National Renal Transplant Service to increase the number of live kidney donor transplantations. The funding covers donor liaison co-ordinators and continuation of the New Zealand Kidney Exchange programme. Last year's funding increase builds on the $4 million invested in Budget 2012 to raise awareness and encourage more people to donate organs,” says Mr Bishop.

Elias, Lacetera and Macis on the repugnance of paying for organs or prostitution: a survey experiment

Markets and Morals: An Experimental Survey Study
Julio J. Elias , Nicola Lacetera , Mario Macis

PLOS One. Published: June 1, 2015DOI: 10.1371/journal.pone.0127069

Abstract: Most societies prohibit some market transactions based on moral concerns, even when the exchanges would benefit the parties involved and would not create negative externalities. A prominent example is given by payments for human organs for transplantation, banned virtually everywhere despite long waiting lists and many deaths of patients who cannot find a donor. Recent research, however, has shown that individuals significantly increase their stated support for a regulated market for human organs when provided with information about the organ shortage and the potential beneficial effects a price mechanism. In this study we focused on payments for human organs and on another “repugnant” transaction, indoor prostitution, to address two questions: (A) Does providing general information on the welfare properties of prices and markets modify attitudes toward repugnant trades? (B) Does additional knowledge on the benefits of a price mechanism in a specific context affect attitudes toward price-based transactions in another context? By answering these questions, we can assess whether eliciting a market-oriented approach may lead to a relaxation of moral opposition to markets, and whether there is a cross-effect of information, in particular for morally controversial activities that, although different, share a reference to the “commercialization” of the human body. Relying on an online survey experiment with 5,324 U.S. residents, we found no effect of general information about market efficiency, consistent with morally controversial markets being accepted only when they are seen as a solution to a specific problem. We also found some cross-effects of information about a transaction on the acceptance of the other; however, the responses were mediated by the gender and (to a lesser extent) religiosity of the respondent—in particular, women exposed to information about legalizing prostitution reduced their stated support for regulated organ payments. We relate these findings to prior research and discuss implications for public policy.

The repugnance of paying for your raw materials: journalists and news stories

The New York Times has an op-ed by Kelly McBride (described as a "media ethicist"): When It’s O.K. to Pay for a Story

"JOURNALISTS frown on paying sources. This decades-old principle stems from the belief that the tawdry practice corrupts the authenticity of information: If I pay you to tell me your story, you may distort its details to up the value.

"So last week, WikiLeaks disturbed many journalists with an initiative to crowd-source a $100,000 “bounty” on the text of the Trans-Pacific Partnership trade deal.
...
"Setting a bounty on the treaty text turns journalistic mores on their head. In traditional newsrooms, the idea of offering a cash incentive for the leaking of confidential documents is anathema. But WikiLeaks, like other media disrupters, leaves us no choice but to reconsider this prohibition. If journalism organizations refuse to do so, they relegate themselves either to secondhand reporting on documents obtained by those outside journalism or to being left behind.
...
"In practice, there has long been a gray zone in the media industry. British tabloid newspapers have a long history of “checkbook journalism,” while some American TV news shows have often paid large sums for certain material..."

Maine hospital goes through with kidney donation despite donor raising funds online

Long story short: woman in need of kidney posts a sign on a car, seen by a stranger who agrees to donate and is compatible. Then he uses social media to raise some money to pay his expenses, and raises more than he anticipated. Hospital delays surgery, worrying that maybe he's breaking the law against getting "valuable consideration" for his donation, but eventually goes ahead. Both donor and recipientt are doing well.

Maine man sees plea on car window, to donate kidney to stranger
Maine donor says kidney transplant OK'd for next week
"Joshua Dall-Leighton of Windham said the surgery will take place June 16 at Maine Medical Center in Portland. Hospital spokeswoman Matt Paul confirmed on Monday that the living kidney donation is scheduled for that day.
 
"Dall-Leighton responded to the plea for a donor on South Portland resident Christine Royles' car. But the surgery was delayed by medical and legal hurdles, including crowdsourced donations to Dall-Leighton aimed at defraying his expenses. Paul said those concerns have been addressed.
...
"Hospital officials said in April they needed time to determine if the donation violated the National Organ Transplant Act, which forbids potential donors from profiting from a donation. A crowdfunding website set up for the donation has raised more than $49,000. Royles also organized fundraisers to pay bills and reimburse Dall-Leighton's time away from work.
 
"Paul said an external legal review confirmed that the transplant "will comply with federal laws that are designed to regulate organ transplants and protect living donors."
    ******************

From Bill of Health: Fundraising and the Delayed Kidney Transplantation: A Loophole in the Ban against Commercialization?
***************

And here's the happy ending
Car-window wish for kidney rewarded: Maine woman receives lifesaving transplant--Both patient and donor are reported to be doing well after surgery, capping an unusual story of strangers and sacrifice.

"Josh Dall-Leighton, 30, a corrections officer at the Southern Maine Re-entry Center in Alfred, saw the sign on Royles’ car last fall and immediately contacted her.

“He saw that sign and said, ‘I need to do this,’ ” his wife said.

Royles, whose kidney failure was caused by an autoimmune disease, was placed on a waiting list of more than 100,000 in need of kidney transplants in 2014, but decided to try to find a donor on her own.

The surgery was almost derailed after a GoFundMe effort raised nearly $50,000 for the couple. The account was set up by a friend of Josh Dall-Leighton with a goal of raising $6,000 to cover expenses for the six weeks he was expected to take off work to recover from the surgery.

But after a story about the transplant was published in the Press Herald and was widely picked up by other media outlets, the donations far exceeded the original goal.

Maine Medical Center put the potential transplant on hold until lawyers could sort out legal and ethical issues regarding the large sum of money. Federal and international laws prohibit the sale of organs, but hospital officials have said it was clear that there was no intent to profit from donating the organ.

Last week the hospital announced that the donation was not a legal impediment, and the surgery would go forward.

“If we didn’t have as strong a voice about this as we did, I don’t believe we would be here right now,” Ashley Dall-Leighton said.

She has said they are considering donating the money to a kidney foundation and the neonatal intensive care unit at Maine Med, where their twins were patients when they were born. They wanted to wait until after the surgery and recovery period to have a true accounting of their expenses – as opposed to an estimate – before determining how much and where to donate, she said."

The Shi'a religious jurisprudence behind Iran's legal market for kidneys

An anthropology graduate student named Elham Mireshghi is studying the market for kidneys in Iran, and includes in her study some interesting observations about the Shi'a fatwas on donation, brain death, and donor compensation that give the market its religious justification.

I haven't seen her paper yet, but she is presenting a paper in Chicago at the U. Chicago Program on Medicine and Religion's
2nd Annual Islamic Bioethics Workshop--Dissecting the Ethics of Organ Donation (June 5-7). Her tantalizing slides are here.

She writes that concern whether transplantation itself was permissible loomed larger than the issue of sales, and that Ayatullah Khomeini initially prohibited transplantation, but that this ruling was changed after it became accepted that the transplanted organ became part of the body of the recipient once blood flowed through it.

Regarding compensation of the donors, she argues that the distinction between a gift and a sale was avoided by framing the question not as

“Can a kidney be bought and henceforth removed and transplanted into a new body,”

but rather as

 “now that a kidney has been removed for the legitimate purpose of being transplanted, can the owner of the kidney receive payment for it?”

I'm looking forward to reading the paper...


HT: Jim Childress, Mario Macis

Everything for Sale? The Ethics and Economics of Compensation for Body Parts (Video of the panel discussion)

Here's the video of the panel discussion I participated in at Johns Hopkins on May 7, Everything for Sale? The Ethics and Economics of Compensation for Body Parts: the panelists were James Childress, Michele Goodwin, Alvin Roth and Debra Satz

The video, including introductions before and questions after, is an hour and 20 minutes. The introduction by Mario Macis starts around minute 6:40, and includes audience voting on questions of whether they would be in favor of regulated markets for kidneys, for hearts, for blood, for human eggs and sperm, and for breast milk. The panel discussion, moderated by Jeff Kahn, starts at minute 14, with each of the panelists, in alphabetical order, giving an 8 minute opening statement. (Mine begins at 33:20, and ends at 41:41, pretty close to the 8 minute guideline:) .)

The Guardian on Iranian kidney sales

The Guardian reports on a bad outcome in Iran's market for kidneys--the recipient dies, and the donor isn't doing well: Kidneys for sale: Iran’s trade in organs

"Iran is the only country in the world where it is legal to sell a kidney. Donors get money from the buyer and from the state, a system which eradicated waiting lists but, detractors say, exploits the poor and vulnerable. Here, we follow one terrible story"

Kidneys in British Columbia: a recommendation for presumed consent, and against compensation for donors

Kidney Transplant Summit recommends presumed consent legislation to increase organ donation in BC.

"BURNABY, BC, May 6, 2015 /CNW/ - The Jury at the first-ever BC Kidney Transplant Consensus Summit hosted by The Kidney Foundation has recommended that British Columbia adopt presumed consent legislation, with the appropriate safeguards in place, to increase the number of kidney transplants in this province.

The Jury, chaired by the Hon. Wally Oppal QC, also considered but rejected the idea of offering financial incentives to organ donors. Living organ donors are currently reimbursed for expenses incurred in donating an organ, but not for the kidney itself. "As a society, we do not condone the sale of organs," said Oppal."


HT: Sangram Kadam

Everything for Sale? The Ethics and Economics of Compensation for Body Parts, at Johns Hopkins, May 7

I'm in Baltimore for the next few days...

The Johns Hopkins Berman Institute of Bioethics
and the Johns Hopkins Carey Business School present
The 2015 Robert H. Levi Leadership Symposium
and Carey Symposium in Markets and Ethics

	Everything for Sale?The Ethics and Economics of Compensation for Body Parts
	Thursday, May 7, 2015 4:30 p.m. - 6:00 p.m.
	Reception to follow
	Johns Hopkins School of Nursing Alumni Auditorium 525 N. Wolfe Street Baltimore, MD 21205
	Welcome: Ruth Faden Andreas C. Dracopoulos, Director and Philip Franklin Wagley, Professor Johns Hopkins Berman Institute of Bioethics Bernard T. Ferrari Professor and Dean Johns Hopkins Carey Business School Introduction: Mario Macis Assistant Professor of Economics and Management Johns Hopkins Carey Business School Panelists include: Professor James Childress Professor Michele Goodwin Professor Alvin Roth Professor Debra Satz Moderator: Jeffrey Kahn Robert Henry Levi and Ryda Hecht Levi Professor of Bioethics and Public Policy Johns Hopkins Berman Institute of Bioethics

Sally Satel: more on compensating kidney donors

April 18 in The Pacific Standard: Sally Satel on The case for compensating kidney donors

"The current system is a qualified failure. For the past decade, transplant operations for all organs have hovered between 27,000 and 29,000 annually, and, in 2014, was the lowest it's been in 11 years.The European model of "presumed consent," wherein a person's organs are taken posthumously unless an individual has specifically forbidden their retrieval, is not a potent solution as less than one percent of deceased individuals are medically eligible to donate.

"Hence, there is a desperate organ shortage in the United States. The situation in other countries, especially poorer countries without good access to dialysis — a death sentence without immediate transplant — is even worse. As a result, the overseas black market is burgeoning. The World Health Organization estimates that 10 percent of all transplants are performed under shadowy, illicit conditions where the risks are high: Corrupt brokers deceive impoverished and illiterate donors about the nature of surgery, cheat them out of payment, and ignore their post-surgical needs. For the recipient, organ quality can be poor and post-operative management dicey. (The exception appears to be Iran, where organ sales are monitored by the government. There, potential donors exceed the number of needy patients.)
...
"Compensating organ donors is not a new idea. In 1983, Al Gore, who championed NOTA, explicitly suggested rewarding donors if altruistic volunteering did not keep up with demand. Moreover, NOTA's legislativehistory implies that the law's felony provision against "valuable consideration" in exchange for an organ was intended to prohibit brokered or direct cash sales between buyer and seller. It is silent regarding a system of in-kind, third-party compensation.

Here is a plan for donor benefits: A governmental entity, or a designated charity, would offer in-kind rewards, like a contribution to the donor's retirement fund, an income tax credit, or a tuition voucher worth roughly $50,000 in value. (This is the amount typically proposed by advocates of incentives.) To enhance deceased donation, a funeral benefit could be offered.

With a third party providing the reward, all recipients, not just the financially secure, will benefit. An imposed waiting period of at least six months would help limit impulsive live donation and, most important, any subsequent remorse. Prospective donors would be carefully screened for physical and emotional health, as is done for all donors currently. Their kidneys could be distributed, according to exiting allocation policies now in place for cadaver organs.

Donors would be guaranteed follow-up medical care for any complications, which is not ensured now. And the cost of the benefits could be underwritten by the enormous savings from dialysis.

Will rewarded donation attract only low-income prospective donors? Perhaps. One option is to require a minimum income for donors, but that strategy prevents all interested parties from participating. Better to start with the assumption that low-income people are capable of making decisions in their own interest. In the end, regardless of who ends up donating, a sound plan ensuring that donors are thoroughly informed, their health protected, and their sacrifice amply rewarded is an ethical one.

How to achieve this? We should start with pilot projects. The Department of Health and Human Services probably could initiate pilot trials, if motivated. The Center for Medicare and Medicaid Innovation has impressively broad authority. In theory, the Center could issue NOTA waivers to academic medical centers interested in administering a pilot program wherein living donors would be rewarded with five years of Medicare coverage.

States should also get involved. The late Pennsylvania Governor Robert P. Casey, who had received a heart and liver transplant a year earlier, signed a 1994 law that would enable a bereaved family of an organ donor to get a burial benefit of up to $3,000 paid by the state directly to the funeral home. State health officials ended up with cold feet, fearing that the law flouted NOTA, but some bold state should proceed with a funeral benefit and force the Department of Justice to action, spurring a vital national debate in the process.

Congressional action is another approach. Lawmakers could amend NOTA to permit pilot trials of incentives by clarifying the intent of the law as a restraint on cash exchange between buyer and seller with or without a broker. The need for a new approach to expanding the supply of donors should resonate with lawmakers on several levels. The first is public health (needless deaths), the second is fiscal (the enormous cost to Medicare — roughly seven percent of its budget is spent on dialysis and its complications), the third is human rights (the global black market); and the fourth is race (minorities are disproportionately disadvantaged by the organ shortage as they are less likely to be referred for transplant)."

American Society of Transplantation conference on Resolving the Organ Shortage

Here's an early announcement of a conference scheduled for February 2016, organized by the American Society of Transplantation, which reflects some of the intense discussion going on in the transplant community about how to alleviate the shortage of transplantable organs.

(As background, recall these three recent posts:

Friday, April 3, 2015

In defense of pilot studies for organ donor incentives

There's no consensus on incentives for kidney donation, but maybe there is on removing disincentives

Two major transplantation societies cautiously consider incentives for organ donation