Breast milk donation--Guinness World Record

 While 'altruism isn't enough' when it comes to SoHOs as Sally Satel reminds us, it's well worth celebrating.  

Here's some news from the Guinness World Records

Big-hearted mom donates record levels of breastmilk to help over 350,000 premature babies
By Vicki Newman

"A kind-hearted mom has helped hundreds of thousands of premature babies by donating more than 2,600 litres of breastmilk.

"Alyse Ogletree (USA) has reclaimed the record for largest donation of breastmilk by an individual with an incredible 2,645.58 litres (89,457.85 US fl oz; 93,111.55 UK fl oz) as of July 2023.

"The 36-year-old, from Texas, first broke the record back in 2014 with a measurement of 1,569.79 litres (53,081 US fl oz; 55,249 UK fl oz).

"Her donations were all made to Mothers' Milk Bank in North Texas, although she’s donated even more that didn’t count towards her total, to close friends and Tiny Treasures Milk Bank.

...

"She had no idea that donating milk was a thing until she found that she was making more than a normal amount of it.

"She explained: “I was overproducing and throwing away milk, unaware overproduction was unique and other mothers struggled.

“Our first child, Kyle, was in the hospital, and I was filling the nurses’ freezer. A nurse asked if I was donating, which I didn’t know was possible, and that is when I learned about it.

...

"Alyse, who is also mom to Kage, 12, and Kory, seven, and has been a surrogate for another, went on: “I got pregnant with my second, Kage, I was excited I would donate again.

“A few months into the pregnancy, there was a news article about someone breaking a Guinness World Record[s title] for donating milk. I did the math and realized I would break that record within three months of donating again if my production rate was as it was before.”

...

"She donated again following the birth of youngest son Kory and again after she acted as a surrogate mom.

“It’s one of the best feelings in the world,” she said.

...

"Visit the Mothers' Milk Bank website to learn more about donating breastmilk."

Peter Singer interview in the NYT

 The NYT interviews the eminent philosopher:

Peter Singer Wants to Shatter Your Moral Complacency  By David Marchese

Q. "I think of you as being best known for your work on animals and ethics, which flows out of utilitarian principles — that the right action is the one that produces the most good. But you’re also seen as one of the godfathers of effective altruism. Can you explain what effective altruism is and how it builds on utilitarianism?

A. "Sure. Effective altruism is the view that firstly, we ought to try to make the world a better place. Doesn’t mean that we all have to become saints, but it should be an important goal for people to think, What can I do to make the world better? And to think about that in a global way, not just for me and my family and those close to me but for people anywhere in the world and, indeed, for beings capable of suffering who are not of our species. Effective altruism developed into a kind of a social movement to encourage people to do that, and effective altruists have done a lot of research to try to find which are the most effective charities in different areas. What is the connection with utilitarianism? I think if you are a utilitarian, you ought to be an effective altruist. Because if you’re a utilitarian you ought to want to reduce suffering and increase happiness, and given that we all have limited resources, surely we should be using those resources as effectively as possible to do as much good as we can."

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Earlier: Singer is one of the founding editors of the Journal of controversial ideas (which has a large, diverse and distinguished editorial board):

Friday, May 21, 2021  Journal of controversial ideas

and he defends sensible views on kidney exchange:

Saturday, November 2, 2019

Video Interview: Peter Singer on Global Kidney Exchange

Peter Singer discusses Global Kidney Exchange, and his recent article in the Lancet, in this interview on the Practical Ethics blog at Oxford.

A(nother) movie about kidney donation

 When it rains it pours: after yesterday's post about Abundant, here's  a trailer for another movie about kidney donation, from the point of view of one donor, who directed the film:

Confessions of a Good Samaritan, Penny Lane

"What do we owe our neighbor?

Director Penny Lane’s decision to become a “good Samaritan” by giving one of her kidneys to a stranger turns into a funny and moving personal quest to understand the nature of altruism. Confessions of a Good Samaritan is a provocative inquiry into the science, history, and ethics of organ transplantation, asking an ancient question in a whole new way: Who is your neighbor, and what do you owe them?

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And here is a podcast (and transcript) in which Russ Roberts interviews the director:

Give Away a Kidney? Are You Crazy? (with filmmaker Penny Lane)

"After filmmaker Penny Lane decided to donate a kidney to a stranger, it took three years and a complex, often infuriating, sometimes terrifying process to make it happen. Along the way, being a filmmaker, she eventually decided to chronicle her experience and explore the question: How can a choice that seems so obvious to the donor seem so strange to everyone else? Listen as she tells EconTalk's Russ Roberts what she learned, what's still a mystery, and what she hopes we'll all take away from her story."

Kidney and liver donation: the movie trailer for Abundant

 You can see the 1.5-minute trailer for the movie here, or here.

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Earlier: 

Tuesday, September 24, 2024

Abundant: a moving documentary about living organ donors

Nondirected liver donation in Canada--from the beginning

The Ottawa Citizen has the story:

The Gosling Effect: How one man (and his liver) forever changed Canadian health care. In 2005, Kevin Gosling became the first living Canadian to anonymously donate an organ to a stranger. It set a cascade of kindness into motion.  by Elizabeth Payne 

"It had been a long road for the then-46-year-old from Cornwall, Ont. For months, health officials wouldn’t take him seriously when he offered to donate the organ anonymously. We don’t do that here, he was told. Not only that, it had never been done before anywhere in Canada.

"Some top officials in Canada’s leading liver transplant program were adamantly opposed to Gosling’s proposal. They said it was unethical and immoral. They questioned his motives, even his sanity. But Gosling persisted, so far as to undergo months of physical and psychological testing and preparation.

"After more than a year and a half, everything was set to go.

...

"Gosling didn’t know much about the recipient. He only knew that it was a child.

...

"Gosling’s stubborn altruism and unwavering belief that he could make a life-changing difference to someone in desperate need almost single-handedly changed Canada’s health-care system.

"In the 19 years since that fateful day when transplant surgeons removed part of Gosling’s liver and transplanted it into the body of the very ill child, the Toronto General Hospital has completed more than 137 such operations involving people donating anonymously to strangers – more than any other hospital in the world.

...

"He was a pioneer in an area in which Canada is now a world leader – the act of anonymously donating part of a liver – a phenomenon that continues to be met with disbelief in some parts of the world.

...

"Gosling’s offer was turned down multiple times until he was eventually put in touch with the head of the multi-organ transplant program at University Health Network, one of only two hospitals in the country where living liver transplants are now routinely done. Along the way he met health officials who were adamantly opposed to the idea, even citing the Hippocratic oath. (Later, he was told by one staunch opponent that following Gosling’s case had made him change his mind.)"

HT: Colin Rowat

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See also:

Cattral, Mark S., Anand Ghanekar, and Nazia Selzner. "Anonymous living donor liver transplantation: The altruistic strangers." Gastroenterology 165, no. 6 (2023): 1315-1317.

and here are all my posts on nondirected donors: https://marketdesigner.blogspot.com/search/label/nondirected%20donor

Abundant: a moving documentary about living organ donors

This past weekend I streamed a preview of a new movie about  living organ donors, kidneys (mostly) and some livers. It's called Abundant, and early in the project it described itself as "a documentary about the human experience of giving."

The movie consists mostly of the stories of donors, the experiences they had, and how they felt and feel about the lives they saved, and their connection to other donors, who are able to share the profound satisfaction that donation has given them. The stories are interspersed with commentary from various kinds of experts. (I was on the preview list since I get a good 60 seconds of commentary:)

The movie is also about chains, starting with kidney exchange chains, since many of the donors are nondirected donors who started chains.

At a more metaphorical level, the movie talks about chains of connections. One of the people they interview is Stephen Dubner, the host of the podcast Freakonomics.  He interviewed me on Freakonomics about kidney exchange, that podcast was heard by Ned Brooks, who was moved to donate a kidney (which started a chain) and then to start the National Kidney Donor Organization (NKDO).  Dubner interviewed him on Freakonomics too, and those Freakonomics interviews contributed more links to the chain.

This movie is destined to be a link in that chain too.

With more than half a million people on dialysis in the U.S., almost everyone knows or knows of someone who needs a kidney transplant.  This is the movie for all of them, with stories that may help them find a donor.  And who knows how many people will create new links in that chain.

It's a movie about how generosity creates abundance.

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earlier:

Wednesday, February 21, 2024

Nondirected living kidney donors--Abundant (the movie, in progress)

Friday, February 26, 2016

A Freakonomics listener was inspired to become a non-directed kidney donor by the podcast on kidney exchange

Surrogacy in Israel

In Israel, where commercial surrogacy is legal, surrogates are more and more coming from educated and religious communities. 

Haaretz has the story:

Married, Educated, Not in It for the Money: The New Profile of Israeli Surrogate Mothers. Who are the Israeli women who wish to be pregnant and give birth for others? The answer to that question has changed dramatically over the past decade  by Ronny Linder

""I'm a little tired of women telling me how disadvantaged all surrogates are, so I thought of starting a thread just for surrogates, with: name + our occupation + town. I'll go first." This is what one moderator of an open Facebook surrogacy group wrote, about a year ago – and the responses came pouring in: a computer programmer from Tekoa, a sociolinguistics Ph.D. from Kfar Sava, a school principal from Jerusalem, a postgraduate student of gender studies from Hatzeva, a lawyer from Gush Etzion, an oncology nurse from Mevasseret Zion and so on and on.

"The post and the responses to it, written in reaction to the prevalent perception that views surrogacy as bearing the potential for exploitation of disadvantaged women who must "hire out" their uteruses for money, largely reflects the great transformation, over a few short years, in the profile of surrogate mothers and of the entire field in Israel. 

...

"Since the surrogacy law was legislated in 1996, almost 1,300 children have been born in Israel through surrogacy procedures. In recent years, the number has averaged around 80 children per year. Data collected by the Health Ministry about surrogate mothers between 2022 and 2023, reveals the changes in the profiles of women who choose to take on the task, as compared with the last study, in 2010. That study, which reviewed surrogate mothers during the years 1996-2010, was conducted by Etti Samama as part of the work for her doctoral thesis in health-system management at Ben-Gurion University. To compile recent data, Adam Ringel and Eti Dekel, for many years the national supervisor of the surrogacy law, collected information from 246 cases – 90 percent of the cases filed with committee in the last couple of years. 

...

"The data indicate a fundamental change in the socio-economic status of women who choose to become surrogates. In terms of education, while in 2010 the majority of surrogate mothers had a high school education (70 percent), nearly one fifth (18 percent) had less than 12 years of schooling, and only 7 percent had academic degrees. Less than a decade and a half later, however, the picture has been transformed: 65 percent of surrogate mothers have an academic degree, and only about one fifth have only a high school education (14 percent) or less than 12 years of schooling (8 percent). The proportion of those with academic degrees among surrogates is significantly higher than that group's share of the population, which is 38 percent.

"A similarly changed picture emerges in terms of employment: In 2023, only 2.5 percent of surrogates were unemployed, compared with 25 percent in 2010. No less interesting is the finding regarding geographical dispersal of surrogates, as compared with the general public: In recent years, almost half (45 percent) of them come from kibbutzim, moshavim and organized communities – compared with just 12 percent in 2010.

...

"An absolute majority of surrogates come from [the world of] religious Zionism, on the one hand, or are secular women from kibbutzim and other organized communities, on the other," Ringel elucidates. "These two groups are seemingly worlds apart, but in the world of surrogacy, you see the resemblance between them. These are independent, strong women, with a fully developed values-based worldview, who are looking to do something big for others, who see surrogacy as a calling, as female empowerment and as the ultimate giving."

"What happened between 2010 and 2024 that led to such dramatic change in the profile of surrogate mothers? Experts in the field ascribe the change mainly to the opening up of the option for married women to become surrogates, beginning in 2010 – a move that significantly increased the pool of potential surrogates and also changed their socio-economic backgrounds.

"This is indeed a transformation: in 2010, all surrogates were unmarried women, 75 percent of them divorced, the rest single (and a few widows). In contrast, in 2022-2023, 80 percent of surrogates were married or in relationships, and only 20 percent were divorced or single.

...

 "There was always an altruistic element with surrogates, but ever since married and more affluent women entered the picture – the economic part became more of a bonus, rather than the main motive," Dekel points out."

Directed and semi-directed living donation of kidneys: a current debate in Israel and elsewhere

 Israel leads the world in per capita living kidney donation. A good part of that comes from the work of Matnat Chaim (gift of life), an organization of religious Jews, who donate kidneys to people they don't know.  They are "semi-directed" rather than non-directed donors, in that the organization allows them to indicate some criteria they would like their recipients to have.  Sometimes they want their recipients to be fellow Jews, and this has generated some controversy in Israel.

Below is a study of this phenomenon, and in an accompanying editorial, a criticism of it.

Nesher, Eviatar, Rachel Michowiz, and Hagai Boas. "Semidirected Living Donors in Israel: Sociodemographic Profile, Religiosity, and Social Tolerance." American Journal of Transplantation (in press).

Abstract: Living kidney donations in Israel come from 2 sources: family members and individuals who volunteer to donate their kidney to patients with whom they do not have personal acquaintance. We refer to the first group as directed living donors (DLDs) and the second as semidirected living donors (SDLDs). The incidence of SDLD in Israel is ∼60%, the highest in the world. We introduce results of a survey among 749 living donors (349 SDLDs and 400 DLDs). Our data illustrate the sociodemographic profile of the 2 groups and their answers to a series of questions regarding spirituality and social tolerance. We find SDLDs to be sectorial: they are mainly married middle-class religious men who reside in small communities. However, we found no significant difference between SDLDs and DLDs in their social tolerance. Both groups ranked high and expressed tolerance toward different social groups. Semidirected living donation enables donors to express general preferences as to the sociodemographic features of their respected recipients. This stirs a heated debate on the ethics of semidirected living donation. Our study discloses a comprehensive picture of the profile and attitudes of SDLDs in Israel, which adds valuable data to the ongoing debate on the legitimacy of semidirected living donation.

Danovitch, Gabriel. "Living organ donation in polarized societies." American Journal of Transplantation, (Editorial, in press).

"Nesher et al are to be congratulated for reporting on a unique, effective, yet ethically problematic manifestation of living kidney donation in Israel. To summarize, living kidney donation has become “de riguer,” a “mitzvah” (a religiously motivated good deed) among a population of mainly orthodox Jewish men living in religiously homogenous settlements. According to the authors, the donors view themselves as donating altruistically within a larger family. The donations, over 1300 of them, 60% of all living donations in the country, have changed the face of Israeli transplantation, reduced the waiting time for all transplant candidates on the deceased donor waiting list,2 and minimized the temptation of Israeli transplant candidates to engage in “transplant tourism,” a phenomenon that was an unfortunate feature of Israeli transplantation before the passage of the Israeli Transplant Act of 2008 that criminalized organ trading.3

So, what’s the problem? Matnat Chaim (“life-giving”), the organization that facilitates the donations, permits the donors to pick and choose among a list of potential recipients using criteria that according to its own website,4 and as Nesher et al note,1 are not transparent. ... frequently the donors elect to donate to other Jews.  ... " Israel is a country with an 80% Jewish majority; a decision to only donate to other Jews, thereby excluding non-Jews, is a practice that, were it reversed in a Jewish minority country, would likely be labeled antisemitic. Concern that the process encourages racist and nationalistic ideation has been raised in the past6 and only emphasized by the public pronouncement of some media-savvy kidney donors.7

"What lessons does the Israeli experience hold for the US and other countries, faced as all are, with a shortage of organs for transplant? Conditional living donation exists to a limited extent in the US: DOVE is an organization that works to direct living kidney donation to US army veterans9; Renewal is an organization that encourages and facilitates living donation from Jews to other Jews but also to non-Jews10; in the 1990s an organization called “Jesus Christians” made organ donation one of its precepts.11 But in each of these cases, it is a minority group whose interests are being promoted.

...

"What now for Matnat Chaim? Given its prominent impact on Israeli transplantation, its allocation policies must be transparent and subject to public comment. Criteria must be medical in nature and religious or political considerations excluded. Fears that as a result living kidney donation rates will plummet are likely exaggerated. "

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I can't help reading this discussion while being very aware that Dr. Danovitch is an ardent opponent of compensating kidney donors, for fear that inappropriate transplants would take place if that were allowed.  In much of that discussion, inappropriateness of transplants focuses on possible harm to the (paid) donors, but the donors in the Israeli case are unpaid. Here his concern is that donor autonomy about to whom to give a kidney comes at the expense of physician autonomy in choosing who should receive a transplant, by "medical" criteria. But frequently those criteria have a big component based on waiting time, rather than any special medical considerations. So maybe in general he thinks that privileging the physician's role in this way is worth having fewer organs and consequently more deaths.

Still, I think he has a point about how we perceive what is repugnant. Having minority donors donate to fellow minority recipients seems much less repugnant than having majority donors specify that they aren't interested in donating to minority recipients.

But, speaking of donor autonomy, I'm not sure that there are practical ways around it, since semi-directed donors could always present as fully directed donors to a particular person that some organization had helped them find. So, we may just have to live with the increase in donations and lives saved that donor autonomy can support.

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Earlier posts:

Thursday, July 27, 2023

Kidney brouhaha in Israel: is a good deed still good when performed by a shmuck?

I ended that post with this:

"I'll give the last word to a Haaretz op-ed, also in English:

 Is It Kosher to Donate Kidneys Only to Other Jews?  A well-known religious journalist in Israel declared the " -only" donation of his kidney. His act is imperfect, but not immoral by Robby Berman"

Monday, July 31, 2023

Altruistic kidney donors in Israel

...

and, here in the U.S.:

Friday, March 12, 2021

Kidneys for Communities

" A new organization, Kidneys for Communities, plans to advocate for living kidney donation by seeking donors who identify with a particular community.  Their come-on is "Put your kidney where your heart is.  Share your spare with someone in your community"

Kidney brouhaha in Israel: is a good deed still good when performed by a shmuck?

 Recently a three way kidney exchange was performed in Israel. This would have been unremarkable under most circumstances: Israel has an active kidney exchange system.  But it caused a strong reaction in the Israeli press, because one of the donors, a  well-known rightwing activist who wanted to donate a kidney so that his brother could receive one, announced that he wanted his kidney to go only to a Jew.

Here's the Ynet story (you can click to render it in English):

 kidney in a transplant marathon: "The condition was - only for a Jew

Here's the Times of Israel (already in English):

Right-wing journalist causes stir by announcing his kidney would go only to a Jew

There were many more, but you get the idea.  Some of the stories point out that the Israeli National Transplantation Center uses an algorithm* that doesn't see the religion of the recipient, so it's not clear that this was a declaration with consequences.  It was meant to provoke, and it did.

But it's a complicated issue.  In the U.S. (and in Israel), donations can be made to a specific individual, but not to a class of individuals.  With living donation, it means that the donor can choose a specific person to donate to, and it isn't an issue how they choose: no one has to donate an organ to anyone, and every donation saves a life (and maybe more than one, particularly since  living donation reduces competition for scarce deceased-donor kidneys). So if this donor had been able to donate to his brother, no one would have thought twice that he was glad to be donating to a fellow Jew.  What made his announcement provocative was that his kidney wasn't going to his brother: his brother was getting a kidney from an anonymous other donor. [Update clarification/correction: this donation was apparently an undirected (except for the 'only' condition) altruistic donation, not part of an exchange involving the donor's brother.]

Among the people I corresponded with about this is Martha Gershun, a kidney donor who thinks and writes clearly, and has given me permission to quote some of what she said.

"I’m wondering if we find the presentation of the story troubling:  “Right-wing journalist and Temple Mount activist causes stir by announcing his kidney would go only to a Jew.”  We would react badly to a story that said:  “Right-wing Trump supporter says he will only give his kidney to a white man.”

"What if instead the stories were:  “Observant Jewish father of 8 wants to donate to a fellow Jew” and “Rural man from West Virginia seeks to help another in his community”?  Would we find those stories more acceptable?"

Part of the feeling that this is a bit complicated has to do with the fact that we don't (and maybe shouldn't) look gift horses in the mouth, i.e. we don't and maybe shouldn't delve deeply into the motivation of altruistic acts that do a lot of good. We should applaud good deeds even if they aren't performed by saints. (I blogged yesterday, about paying it forward, an umbrella term for doing good deeds in a spirit of gratitude for having ourselves benefited  from past good deeds performed by others. We generally don't find it necessary to condition our approval on precisely who receives the forward-paid gifts.)

So, while I'm not sorry to see that this statement by a kidney donor is a much discussed provocation, I'm inclined to think that a good deed remains a mitzvah even if not performed by a tzadik, as we might have said in our New York English when I was growing up.

I'll give the last word to a Haaretz op-ed, also in English:

 Is It Kosher to Donate Kidneys Only to Other Jews?  A well-known religious journalist in Israel declared the " -only" donation of his kidney. His act is imperfect, but not immoral by Robby Berman

+++++++++++++++

*On the algorithm used in Israel and elsewhere, see e.g.

Wednesday, January 15, 2020 Kidney Exchange in Israel (supported by Itai Ashlagi)

and

Friday, October 1, 2021 Stanford celebrates Itai Ashlagi and the UAE-Israel kidney exchange

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Update: related subsequent post 

Monday, July 31, 2023

Altruistic kidney donors in Israel

Paying it forward

 Scott Cunningham, an economist who devotes a lot of his efforts to providing public goods, recently had a post on the phrase "paying it forward." He writes that he connected it with a movie with a similar name, but has recently come to view it differently (for reasons I find too embarrassing to quote, but related to the fact that I use the phrase now and then.)

Wikipedia says "Pay it forward is an expression for describing the beneficiary of a good deed repaying the kindness to others instead of to the original benefactor."  It goes on to say "Robert Heinlein's 1951 novel Between Planets helped popularize the phrase."  I could have first seen it there, as I read much of Heinlein's science fiction when I was a boy.

My associations with the phrase now mostly come from the motivations and actions of some living kidney donors, particularly in kidney exchange chains.

The phrase is certainly is evocative of what we do so much of in academia (when we're doing academia well): it describes the relationship between studying and teaching, and between teachers and students.

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Scott's post announced that, as part of paying things forward, he's funding a prize for young economists.

Sell a kidney to save a life? by Dylan Walsh, in WIRED.

 Martha Gershun alerts me to this story which appeared this morning in WIRED, in which the author, a kidney transplant recipient (24 years ago), considers the history of the long debate about whether kidney donors might be compensated, to end the shortage of life-saving kidney transplants.  It's very well written, and contains some details (e.g. dialog between Al Gore and Barry Jacobs) that I hadn't seen before.  It's well worth reading the whole thing.

Would You Sell One of Your Kidneys? Each year thousands die because there aren’t enough organs for transplants, and I may be one of them. It’s time to start compensating donors. by Dylan Walsh

Here's the first sentence:

"WHEN WE WERE teenagers, my brother and I received kidney transplants six days apart. "

Here's some history of transplantation itself:

"In 1963, the world’s preeminent kidney transplant surgeons met in DC to discuss the state of the field. They were few in number and dispirited. Roughly 300 operations had been performed by then, with only 10 percent of patients surviving more than six months, according to one account. The procedure remained no more than “highly experimental,” in the words of even its fiercest proponents. But the prevailing gloom lifted when two little-known surgeons from Denver, Thomas Starzl and Thomas Marchioro, presented results from a series of transplants they’d performed. They had managed to flip the outcomes: 10 percent failure, 90 percent success. A euphoric shock spread through the crowd, which quickly gave way to skepticism. The results were studied, confirmed, and eventually replicated. "

Here's a bit about the origins of the legal ban on compensating donors (the 1984 National Organ Transplant Act, or NOTA):

"In 1967, one study found that roughly 8,000 people were eligible for a kidney transplant; only 300 received one.

"IT TOOK ABOUT a decade for someone of enterprising disposition to step into this gap. H. Barry Jacobs was a Virginia doctor who lost his license to practice medicine in 1977 for attempting to defraud Medicare. He spent 10 months in jail and shortly after his release turned his energies to the unregulated business of organ brokering. His company, International Kidney Exchange Ltd., was built around the fact that most of us are born with two kidneys but can function with one. If one kidney is removed, the other grows larger and works harder, filtering more blood to cover as best it can for its emigrant twin. This redundancy supported Jacobs’ straightforward business model. He would connect people who wanted to sell one of their kidneys, for a price of their choosing, with people who needed one. As a mi"ddleman, Jacobs would charge a brokerage fee to the recipients.

"At the time, Al Gore, then a member of the US House of Representatives, was developing the National Organ Transplant Act, which centered on establishing a repository to match organ donors with those in need of a transplant. Upon hearing of Jacobs’ plan, Gore also took up the question of compensation. Jacobs appeared before the Subcommittee on Health and the Environment on October 17, 1983, and spoke with truculence. He talked about one doctor who had testified before him “sitting on his butt” and failing to seriously address the problem of organ shortages. He interrupted and challenged his questioners. His testimony, above all, highlighted the likely abuses in an unregulated organ market.

“I have heard you talk about going to South America and Africa, to third-world countries, and paying poor people overseas to take trips to the United States to undergo surgery and have a kidney removed for use in this country,” Gore said. “That is part of your plan, isn't it?”

“Well, it is one of the proposals,” Jacobs said.

...

"This exchange gave public force to a debate that had been unfolding in the dimmer theater of academia ever since transplantation first became possible. ...Proponents of an organ market had historically invoked the crisp—some say cold—logic of utilitarianism. A properly designed market, they suggested, would provide economic surplus to both the organ donor, in the form of money, and to the recipient, in the form of a longer, healthier life. Opponents of a market typically crafted their dissents from the gossamer realm of ethics."

There's more, both personal and policy.  

Good luck to all who need a kidney and to those who donate them. Maybe we'll make some more progress in 2023.

Josh Morrison profiled in Vox

 Josh Morrison, the founder of WaitlistZero and 1DaySooner, is an unusually energetic and effective effective altruist.   

Here's a profile in Vox:

Josh Morrison took risks for science, and he thinks you can, too. From kidney donations to human challenge trials for Covid-19 vaccines, Josh Morrison shows the vast good any individual can do. By Muizz Akhtar

"Morrison first became familiar with this kind of direct public health participation when he read about kidney donations in the New Yorker when he was a law student in 2009. In the piece, people explained why they gave their kidneys to strangers in need — though there was slight risk to donors, the reward and benefit for the recipients was more than worth it. Two years later, he donated a kidney himself.

...

“The basic logic of my work in general is to try to use a sort of identity politics to get better political decision-making,” Morrison told me. “So with kidney donation, the theory is if kidney donors are more empowered in the political system as a sort of identity group, then the system will treat donors better and that will mean more people donate.”

HT: Frank McCormick

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I've mentioned Josh Morrison in many of my posts...

Do (some) kidney donors have a right to donate?

 Here's an article that considers whether some potential kidney donors, who have more appetite for risk than some transplant teams, might nevertheless have a right to donate.

Donor Autonomy and Self-Sacrifice in Living Organ Donation: An Ethical Legal and Psychological Aspects of Transplantation (ELPAT) View  , by Nizam Mamode, Kristof Van Assche2, Lisa Burnapp, Aisling Courtney, David van Dellen, Mireille Houthoff, Hannah Maple, Greg Moorlock, Frank J. M. F. Dor, and Annette Lennerling, Transplant International, 35, 2022, https://www.frontierspartnerships.org/articles/10.3389/ti.2022.10131, DOI=10.3389/ti.2022.10131    

ABSTRACT: "Clinical teams understandably wish to minimise risks to living kidney donors undergoing surgery, but are often faced with uncertainty about the extent of risk, or donors who wish to proceed despite those risks. Here we explore how these difficult decisions may be approached and consider the conflicts between autonomy and paternalism, the place of self-sacrifice and consideration of risks and benefits. Donor autonomy should be considered as in the context of the depth and strength of feeling, understanding risk and competing influences. Discussion of risks could be improved by using absolute risk, supra-regional MDMs and including the risks to the clinical team as well as the donor. The psychological effects on the donor of poor outcomes for the untransplanted recipient should also be taken into account. There is a lack of detailed data on the risks to the donor who has significant co-morbidities."

"The donation of a solid organ for transplantation by a person who is alive at the time represents a unique event in healthcare, since the donor will gain no physical benefit from undergoing major surgery, which has a low but nevertheless significant rate of major complications and death (1, 2). Living donors are usually highly motivated individuals, whose appetite for risk differs substantially from that of the healthcare team (3). This may lead to conflicts between the clinical team and potential donors-some examples are given in Figure 1. Were the decisions of the clinical teams correct? This article explores the issues raised by these cases and others, and considers the principles which might help to guide decision-making. It is an overview aimed at healthcare professionals, and is not intended to be an in-depth ethical review."

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And here's a news story from People.com about just such a donor, who exercised his right to donate:

When His Patient Couldn't Find a Kidney Donor, This Doctor Gave His: 'It's a Feeling That's Hard to Describe'  "I was always in awe of people who donated organs. It fascinated me. And I soon decided that I didn't just want to talk the talk," said Dr. Aji Djamali    

By Johnny Dodd 

"Djamali, a nephrologist who chairs the department of medicine at Maine Medical Center Department, was wheeled into an operating room and surgeons removed his kidney. Within minutes another team went to work transplanting the organ into Jartz, who had been diagnosed with polycystic kidney disease (PKD) — an inherited disorder that causes the kidneys to enlarge and stop working — seven years earlier. (The two men met when Jartz was Djamali's patient at the UW Health Transplant Center in Madison, Wisconsin.)

"For Djamali, who was back at work two days later (Jartz was discharged after five days), being able to donate an organ was the culmination of a dream that began decades earlier while in medical school.

...

"Looking back on the experience, Djamali struggles to find the words to properly convey what it feels like to give a part of his body to another person.

"It's a feeling that's hard to describe," he says. "It's like watching your child being born. It's just this sensation of freedom, elation and happiness."

"But, of course, there was another reason why he did it. The veteran physician knew that the story of his actions might spur someone else to perform a similar act.

"Half of the reason was to help John," says Djamali, who is in touch with Jartz on a daily basis. "But the other reason was to encourage people to help others, to inspire them to consider stepping up and helping the 90,000-plus patients across the nation who are on waiting lists to get a transplant."

Renewal: "My donor wanted to give me her kidney — and get home in time for Shabbat"

 When reporter Stewart Ain needed a kidney transplant, he contacted Renewal. He explains the process that led to him being matched to an altruistic donor and transplanted.

My donor wanted to give me her kidney — and get home in time for Shabbat  By Stewart Ain

"Two months later, my wife Meryl and I were sitting in Renewal’s office speaking with Rabbi Josh Sturm, Renewal’s director of outreach, and Miriam Lefkowitz, Renewal’s kidney coordinator. We were told to reach out to friends, relatives, neighbors — everyone we knew — and ask them to listen to an online presentation the rabbi would make about what kidney donation entails and how it literally gives the recipient a new life. 

"As we walked out the door, the rabbi said they had found that if at least 200 people listened to the presentation, the odds were very good a donor would be found. And the donor would not necessarily be someone actually listening online but often from the advance publicity the presentation would generate.

"Renewal created a flier for us with information about the upcoming presentation. At my request, several synagogues posted it on their websites, a couple of Jewish weekly newspapers ran it each week, and Hadassah Magazine featured my story in an article about kidney transplants. One of the three synagogues we belong to contacted the NBC station in West Palm Beach, Florida. The station’s reporter interviewed both me and one the synagogue’s rabbis. A story about my need for a kidney was on the evening newscasts.

"The presentation took place during the 10 days between Rosh Hashanah and Yom Kippur last fall. More than 250 computers tuned in. In the following days I learned that several people had asked Renewal for the nasal-swab kit needed to see if they were a match for me. Later, I heard from several friends and relatives that they had been disqualified as donors for various reasons. "

His donor may not have been one of those who had heard the presentation about his case.

"The idea of donating one of her kidneys surfaced again last Hanukkah when someone mentioned that their daughter had just donated a kidney through Renewal. She contacted the organization in November, and three days later received a swab kit. On Jan. 17, a rabbi from Renewal called and asked if she was still interested in donating. When she said yes, she was told she was a match for two people.

“I remember saying, `I’m not going to play God, let whoever is a better match have it,” she said."

Both patient and donor are doing well.

Challenge trials in Britain and (not) in the U.S.

 The NY Times has an excellent piece on Covid vaccine challenge trials, and the different traditions (and repugnance) in Britain and the U.S.

Britain Infected Volunteers With Covid. Why Won’t the U.S.? By Kate Murphy

"In an age of masking, compulsive hand sanitizing and plexiglass dividers, it seems inconceivable that for more than 40 years people enthusiastically signed up — and were often put on a waiting list — to have respiratory viruses, including coronaviruses, dripped into their noses.

"They were volunteers at the Common Cold Unit, set up in 1946 by the British government’s Medical Research Council.

...

"the Common Cold Unit established and refined a model for so-called human challenge studies that paved the way for the first Covid-19 human challenge study just completed in Britain, where young, healthy and unvaccinated volunteers were infected while researchers carefully monitored how their bodies responded.

"Then, as now, there were those who decried deliberately infecting or “challenging” healthy volunteers with disease-causing pathogens. It violates the medical principle of “do no harm.” The trade-off is a unique opportunity to discover the causes, transmission and progression of an illness, as well as the ability to more rapidly test the effectiveness of proposed treatments.

...

"“The key benefit of human challenge studies is that they are controlled — everyone gets the same virus, the same amount and they are in the same environment,” said Dr. Christopher Chiu, professor of infectious diseases at Imperial College London and chief investigator in Britain’s Covid challenge study.

...

"In the United States, the regulatory hurdles to conduct challenge studies mean there are precious few, mostly for finding better treatments for malaria, cholera and influenza. Ethicists and regulators are more comfortable approving clinical trials where subjects are given a treatment, say a drug or vaccine, to see if it helps improve a condition volunteers already have, or could prevent them from developing later.

...

"Dr. Fauci’s office said the institute has no plans to fund Covid-19 human challenge trials in the future. Many bioethicists support that decision. “We don’t ask people to sacrifice themselves for the good of society,” said Jeffrey Kahn, director of the Johns Hopkins Berman Institute of Bioethics. “In the U.S., we are very much about protecting individual rights and individual life and health and liberty, while in more communal societies it’s about the greater good.”

"But Josh Morrison, a co-founder of 1Day Sooner, which advocates on behalf of more than 40,000 would-be human challenge volunteers, argues it should be his and other people’s right to take risks for the greater good. “Most people aren’t going to want to be in a Covid challenge study, and that’s totally fine, but they shouldn’t project their own choices on other people,” he said."

HT: Axel Ockenfels

Kidney donation and the strange, viral story of the "Bad Art Friend"

 A short story about a kidney donor prompted a long article in the NY Times Magazine last week, and that article has gone viral. Here's the article:

Who Is the Bad Art Friend? Art often draws inspiration from life — but what happens when it’s your life? Inside the curious case of Dawn Dorland v. Sonya Larson.   By Robert Kolker

Here are some paragraphs that set the stage for the drama described in the article.

"On June 24, 2015, a year after completing her M.F.A. in creative writing, Dorland did perhaps the kindest, most consequential thing she might ever do in her life. She donated one of her kidneys, and elected to do it in a slightly unusual and particularly altruistic way. As a so-called nondirected donation, her kidney was not meant for anyone in particular but instead was part of a donation chain, coordinated by surgeons to provide a kidney to a recipient who may otherwise have no other living donor. 

...

"Several weeks before the surgery, Dorland decided to share her truth with others. She started a private Facebook group, inviting family and friends, including some fellow writers from GrubStreet, the Boston writing center where Dorland had spent many years learning her craft. After her surgery, she posted something to her group: a heartfelt letter she’d written to the final recipient of the surgical chain, whoever they may be."

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The NYT article goes on to tell a sad story about how some of the "fellow writers" took a dislike to the kidney donor, feeling that her good deed was inspired by nothing more than attention seeking.  One of them published a short fiction called "The Kindest," about just such a supposed donor (depicted as a racist or at least racially insensitive "white savior").  It contained a letter vey much like the one the real kidney donor shared.  Some but not all of the dispute that followed involves the question about whether this met the legal definition of plagiarism.

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This is a good place to (re)state my own view, as someone with a long interest in kidney exchange, that kidney donors, especially nondirected donors, are heroes whose donation does a world of good.  Thousands of kidney transplants have been facilitated by kidney exchange chains begun by nondirected donors.  I've met a number of such donors, and they seem to me to be by and large selfless people who did something wonderful that became a significant part of their lives, even though they don't generally regard themselves as heroes.

Listen to some of their stories here, in interviews of donors by a donor: Donor Diaries Podcast

Of course, they probably have to be a bit careful telling their stories, and discussions among donors might be safe spaces where they won't be misunderstood.  That's surely an experience that donors have in common with other people who have done or experienced something remarkable, such as military veterans who are Medal of Honor winners, and who give each other needed support when recognized as such.

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But how about art?

Here's a story in the New Yorker reviewing the short story described in the NY Times Magazine article. It asks whether the short story in question qualifies as the kind of art that might justify the liberties the author took.

The Short Story at the Center of the “Bad Art Friend” Saga.  A Times Magazine feature has prompted feverish discourse about the ethics of artistic appropriation. Is the art in question any good?  By Katy Waldman

"This raises the question of whether Larson did any better of a job exploiting Dorland’s kidney donation for personal gain, insofar as exploiting existing material for personal gain is a pretty good working definition of being a writer.

"By my reading, she did not. Larson lifted an extremely potent premise—the needy organ donor, seeking connection and validation—and crafted a story that manages to diminish its built-in intrigue. In fact, “The Kindest” falls short in precisely the ways the saga laid out in the Times Magazine piece might lead us to expect: it makes a cartoon of the donor character, and it over-relies on identity-inflected hand-waving. Also, the prose is bad."

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I don't know how much of a larger lesson is contained in all this, aside from the observation that even acts of great generosity can be viewed with suspicion, by those who are so inclined.  This may have something to do with why the efforts against black markets in kidneys have turned into an obsessive campaign against compensation for donors and  repugnance to any transactions that resemble rewarding donors for their generosity.

I think this is a shame. To put it another way, even if some donors were to be motivated by attention seeking, isn't it better for society if they seek attention by behaving heroically in such beneficial ways? (Just think about all the wasteful or destructive ways that attention seekers sometimes seek attention...)

I'm sticking to my view of donors as heroes. 

(I even have a paper about heroism and kidney donation:

Niederle, Muriel and Alvin E. Roth, “Philanthropically Funded Heroism Awards for Kidney Donors?, Law & Contemporary Problems, 77:3, 2014, 131-144.  )

National Kidney Donor Advocate Conference, on YouTube

 Here's an announcement I received from Ned Brooks, the founder of  NKDO, National Kidney Donation Organization (formerly Donor to Donor).  If I understand correctly, the different talks and interviews will be available at the link after first streaming in conference style, starting at 9am Pacific time. It includes a video of Ned interviewing me.

I'll update this post as necessary. 

"This Wednesday, October 21^st, NKDO, National Kidney Donation Organization (formerly Donor to Donor) will release the virtual National Kidney Donor Advocate Conference. This event is designed to give volunteer living donor advocates the information they need to be more effective advocates for living donation. Transplant industry experts across the country will be presenting to you and delivering invaluable advice about their area of expertise.

The conference will stream on our YouTube channel beginning at 12:00 noon Eastern this Wednesday. The conference will be in segments and accessed through the “playlist”, either streaming as one event or accessed at different points in the conference. The link is  https://www.youtube.com/channel/UCsoS-yavRQCVl7bwcjT2iCA , which will go live at noon Eastern on Wednesday.

- Have you ever wondered about the transplant surgeons who do the surgery? What they are thinking and what they would like you to know? Dr. Joshua Mezrich, transplant surgeon at UWMadison and author of “When Death Becomes Life: Notes from a Transplant Surgeon” talks about his experience with organ donors and recipients.

- Are you a living donor or a transplant recipient, or expecting to be one? Do you remember the experience of being evaluated at the transplant center and listening to all the information, and maybe feeling a little overwhelmed? Living Donor Coordinator Marian Charlton and Patient Coordinator Janet Hiller are two of the most respected voices in transplant, and they will tell you what they want you to know to better understand the process. Anyone who goes through this experience or has a loved one in transplant will want to see these segments.

- Living kidney donors deserve all protections available, from reimbursement for out-of-pocket costs and lost wages to medical coverage for medical issues that may arise months or years after donation. Garet Hil, founder and CEO of the National Kidney Registry, talks about the suite of protections available to living donors through Donor Shield.

-  Are you a kidney patient in need of a donor? Harvey Mysel, a two-time kidney recipient and founder and CEO of the Living Kidney Donor Network, talks about how to have your kidney donor find you.

- Professor Alvin Roth won the Nobel Prize in Economics for his work creating the algorithms that contributed to the creation of the “kidney chain”, a development that transformed kidney transplant procedures. Prof. Roth discusseshis work and the business known by the intriguing moniker of “repugnanttransactions.”

- All kidney patients will benefit by watching nephrologist Dr. David Serur talk about kidney disease and what every kidney patient and advocate needs to know to be properly informed about how to deal with renal disease. 

- Non-directed, or altruistic, donors are a rare breed, though we are trying to change that. No one knows the brain of the non-directed donor better than Professor Abigail Marsh, who has been studying non-directed donors for years. If you want to better understand why someone will happily donate a kidney to a stranger, this presentation will help answer that question.  Prof. Marsh is the author of “The Fear Factor: How One Emotion Connects Altruists, Psychopaths, and Everyone In-Between.”

- If you listen to podcasts, you are probably familiar with “Freakonomics” and its creator, Stephen Dubner. It was the Freakonomics interview with Prof. Roth that set Donor to Donor and NKDO into motion, and our interview with Mr. Dubner will interest anyone who understands “the power of the pod”.

- Jim Gleason is a heart transplant recipient and the president of TRIO, Transplant Recipients International Organization. Mr. Gleason is a motivational speaker who asks the question, “Are you a cookie monster?”

Here's the video of my video

KIDNEY EXCHANGE AND THE ETHICS OF GIVING by Philippe van Basshuysen

 Philippe van Basshuysen considers various forms of kidney exchange, including non-directed (altruistic) donor chains, but not global kidney exchange (GKE), which he defers for future consideration. His work is motivated by the effective ban on kidney exchange in Germany, and, he writes, in " Bulgaria, Estonia, Finland and Hungary, among others." He also notes that non-directed donors are excluded in " Belgium, France, Greece, Poland and Switzerland..."

KIDNEY EXCHANGE AND THE ETHICS OF GIVING
Philippe van Basshuysen,  December 2019
Forthcoming in Journal of Ethics and Social Philosophy

"The arguments given here are not wedded to a specific moral theory. They will appeal to effective altruists, but because of their weak, conditional premises, many people who are not committed effective altruists will welcome them as well. They are also consistent with conservative views on donor protection and allocative justice concerning patients on waiting lists. I hope that these arguments will lead to a clarification of the debates about the ethics underlying KE programmes, particularly in countries that have hitherto banned these programmes."

Effective altruism and (non-directed) kidney donation

In their Christmas day discussion, the podcast Here Be Monsters considers the Quality Adjusted Life Years (QALYS) that can result from non-directed kidney donation, and how that qualifies it as a form of effective altruism.

December 25, 2019 Here Be Monsters HBM127: QALYs

"In 2014, a post showed up on effectivealtruism.org’s forum, written by Thomas Kelly and Josh Morrison.  The title sums up their argument well: Kidney donation is a reasonable choice for effective altruists and more should consider it. 

They lay out the case for helping others through kidney donation.  Kidney disease is a huge killer in the United States, with an estimated one in seven adults having the disease (though many are undiagnosed).  And those with failing kidneys have generally bad health outcomes, with many dying on the waitlist for an organ they never receive.  There’s currently about 100,000 people in the country on the kidney donation waitlist.  An editorial recently published in the Journal of the American Society of Nephrology estimated that 40,000 Americans die annually waiting for a kidney. 

The previously mentioned post on the EA forums attempts to calculate all the goods that kidney donation can do, namely adding between six and twenty good years to someone’s life.  Quantifying the “goodness” of a year is tricky, so EAs (and others) use a metric called “Quality Adjusted Life Years” or QALYs. 

The post also attempts to calculate the downsides to the donor, namely potential lost wages, potential surgery complications, and a bit of a decrease in total kidney function.  

The post concludes that kidney donation is a “reasonable” choice.  By the EA standards, “reasonable” is pretty high praise; a month or so of suffering to give about a decade of good life to someone else, all with little long term risk to the donor.  

On this episode, Jeff interviews Dylan Matthews, who donated his kidney back in 2016.  His donation was non-directed, meaning he didn’t specify a desired recipient.  This kind of donation is somewhat rare, comprising only about 3% of all kidney donations.  However, non-directed donations are incredibly useful due to the difficulty of matching donors to recipients..."
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The discussion of kidneys and effective altruism starts about minute 7 in the podcast:

Kidney donor athlete: Steve

Kidney donors have to be in excellent health, and the site Kidney Donor Athletes celebrates some exceptional donors, particularly as they return to their physically active lives after donating a kidney.

The recent entry Meet Kidney Donor Athlete, Steve!,  is inspiring on multiple levels. It is the story of the donor (and the people he met along the way) who started the chain at Virginia Mason hospital in Seattle, that I blogged about after hearing from the transplant nephologist Dr. Cyrus Cryst:

Monday, March 25, 2019

Followup on the latest Freakonomics kidney exchange chain

Here's how he describes his wife's reaction to his decision to become a non-directed donor:
"My wife said to me “This is the weirdest midlife crisis I have ever heard of.”  I told her, “You know, some guys buy Corvettes and have affairs.”  That quieted her down.  For a minute."

And here's a thought on where chains can go:
"I was elated to learn that the other donation would be to a Native Alaskan woman from Utqiagvik, Alaska, which is the northernmost town in the U.S.  Just think of how terrifying it must be to live in an Arctic village with a serious health problem.  Her odds of receiving a kidney were very small.  There is no way she could have gotten herself to Seattle in time to receive a deceased person’s kidney.  She does not live right around the corner.  And, having spent much of my working career sailing all over the Bering Sea and the Arctic Ocean, I have a deep emotional connection to Alaska.  It just felt right."
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In separate correspondence, I learned that one of the hardships for Debbie, from Utqiagvik in Alaska, was that for some time after her transplant "it meant I couldn't eat raw whale muktak (outer skin and blubber of the whale ) which i love..."