More on non-anonymous kidney exchange in India

 Here's some further description of how kidney exchange is conducted in India without authorization* to use nondirected donors (so that all exchanges are conducted in cycles, i.e. in the absence of chains of exchange).

Vivek B. Kute, Himanshu V Patel, Subho Banerjee,Divyesh P Engineer, Ruchir B Dave, Nauka Shah, Sanshriti Chauhan ,Harishankar Meshram , Priyash Tambi  , Akash Shah, Khushboo Saxena,Manish Balwani , Vishal Parmar, Shivam Shah, Ved Prakash ,Sudeep Patel, Dev Patel, Sudeep Desai, Jamal Rizvi , Harsh Patel, Beena Parikh, Kamal Kanodia, Shruti Gandhi, Michael A Rees,  Alvin E Roth,  Pranjal Modi “Impact of single centre kidney-exchange transplantation to increase living donor pool in India: A cohort study involving non-anonymous allocation,”Nephrology, September 2024, https://onlinelibrary.wiley.com/doi/10.1111/nep.14380  

"In India, 85% of organ donations are from living donors and 15% are from deceased donors. One-third of living donors were rejected because of ABO or HLA incompatibility. Kidney exchange transplantation (KET) is a cost-effective and legal strategy to increase living donor kidney transplantation (LDKT) by 25%–35%.

"3.3 Non-anonymous allocation

"The THOA*, which regulates KET in India, is silent on the need for anonymity, so there is no legal requirement for anonymity in India, as compared with other countries, such as the Netherlands and Sweden. Our experience was that 90% of iDRP [incompatible Donor-Recipient Pairs] requested the opportunity to meet their matched donor and recipient pair (mDRP) and 10% asked the treating physician to decide if they should meet. None of the iDRP requested anonymity. Therefore, we have practiced absolute non-anonymity, meaning that all mDRPs meet and share medical reports after a potential exchange is identified, but before the formal allocation of pairs. If an iDRP requests anonymity, we would be willing to accommodate them, but to date, none have done so.

"Upon meeting with their mDRP, the iDRP can refuse the proposed exchange option without reason and continue to be on the waitlist and active in the KET pool. iDRPs must complete transplant fitness and legal documents required for transplant permission from the health authority before they are given the opportunity to meet their mDRP. A meeting between mDRPs occurs in the presence of a transplant physician, who can help solve any query before the proposed match is accepted by the involved pairs. iDRP are introduced to their mDRP prior to scheduling transplants to avoid chain collapse due to iDRP refusal of the mDRP. The mDRP shares medical reports of donors with each other, can also discuss with their other family members, and consults with their family physician/nephrologist before deciding whether to proceed. Living kidney donors are fully informed of perioperative and long-term risks before making their decision to donate. In India, donor age group matching is most commonly expected for all iDRP in the KAS."

###########

Earlier:

Monday, September 18, 2023

Kidney Paired Donation in Developing Countries: a Global Perspective

*Here's the THOA, THE TRANSPLANTATION OF HUMAN ORGANS AND TISSUES ACT, 1994

Kidney exchange in Germany?

 A draft law to make kidney exchange legal in Germany, and to allow nondirected donation, is making some progress: here (with the help of Google Translate) is a news story on the proposed new law.

Living kidney donation should be made easier

"In order to reduce the organ shortage in Germany, Federal Health Minister Karl Lauterbach (SPD) wants to make living kidney donations easier. This emerges from a draft amendment to the Transplantation Act. The Star first reported.

"According to the draft, the previously prescribed “proximity ratio” for so-called cross donations will no longer apply in the future. To date, couples in which one person wants to donate a kidney to the other but this is not possible due to incompatibility are only allowed to “cross-donate” with another couple in a comparable situation if there is a close relationship between the couples. This is intended to prevent organ trafficking and commercialization.

"In the future, this cross donation could be made without proximity, thereby significantly expanding the circle of recipients. According to the draft bill, the donation should be anonymous and organized by transplant centers. The aim of anonymity is to prevent money from being paid for an organ.

"Anonymous kidney donations should also be possible in principle. In the future, people in Germany could donate a kidney for selfless reasons without knowing who it is going to. In countries like the USA, this option has existed for a long time."

HT: Dorothea Kubler

The end of anonymous sperm donation...

 In  Colorado, a new law ending anonymous sperm donation seeks to catch up with the technological developments involving genetic sequencing that have already made anonymity of sperm or egg donors fairly fragile. Here's an account in JAMA:

The End of Anonymous Sperm Donation in Colorado--A Step Forward to a New Fertility Future in the US?  by I. Glenn Cohen, JD1; Eli Y. Adashi, MD, MS2; Seema Mohapatra, JD, MPH3   JAMA. Published online October 24, 2022. doi:10.1001/jama.2022.19471

"On May 31, 2022, Colorado became the first state to effectively ban anonymous gamete donation.1 Starting in 2025, fertility clinics in Colorado must collect identity and medical information from sperm and egg donors and may not match donors that do not agree to such disclosure (the statute uses the word “donor” though in many instances compensation is provided). The new law also requires that the clinics make a request that donors update their contact information and medical history at least once every 3 years. The law provides that a donor-conceived person aged 18 years or older shall be provided donor information upon request. The statute purports to also prohibit fertility clinics outside Colorado from providing gametes to Colorado residents (or individuals located in Colorado) if they do not abide by these rules. The statute also instructs clinics not to match a donor once it is known or reasonably should be known that “25 families have been established using a single donor in or outside of Colorado.”1

...

"Two states, Utah and Washington, have enacted statutes requiring the collecting and sharing of identifying information about a donor with donor-conceived children who request it after reaching the age of 18 years.3 However, both states also permit a donor to opt out, thereby limiting the utility of the laws. By contrast, the UK, Germany, Sweden, France, and many other countries have created mandatory registries that donor-conceived individuals can access when they turn 18 years of age, having an effect similar to the new Colorado law.3,4

"The new Colorado law highlights the gap between the law and reality of gamete donor anonymity in the US outside Colorado. Banks have promised donors anonymity in other US states and prior leaks of donor information from banks’ files have been exceedingly rare, if they ever happened at all; the banks have litigated to protect the identifying information provided by the donor.3 But in a practical sense, the promise of anonymity is now much less thoroughgoing.4 Direct-to-consumer genetic testing has become very common, and it has been estimated that 100 million people worldwide have taken a direct-to-consumer genetic test by 2021.4 Studies estimate that a genetic database covering only 2% of the population could match nearly anyone in that population.4 The combination of direct-to-consumer genetic testing, publicly available information, and social media suggest that many donor-conceived individuals will in fact be able to reidentify their gamete donor."

Non-directed organ donors and NLDAC financial support

For some years I've been a member of the advisory group of the National Living Donor Assistance Center (NLDAC) which is authorized to offer federally funded financial support (for travel, and now also for lost wages and childcare expenses) to needy donors whose recipients also cannot afford to offer such support. As kidney exchange has grown, so have the number of non-directed donors, who don't have a particular recipient in mind. In a recent email, NLDAC has defined how these donors can qualify for financial assistance.

"Defining Non-Directed Donors

"Eligibility for NLDAC depends primarily on the recipient's household income. This is because the Organ Donation and Recovery Improvement Act requires NLDAC to assess the recipient's ability to reimburse their donor before providing reimbursement with federal funding. Most donors have a particular recipient in mind, and that person is allowed to reimburse their expenses, if they are willing and able to do so. NLDAC provides reimbursement when the recipient cannot afford to provide it. Some donors do not have a recipient to ask for help, though. A non-directed donor is a living donor with no intended recipient. These donors can apply to NLDAC without recipient information because there is no identified recipient. Non-directed donors are eligible for NLDAC regardless of their eventual recipient's information, as long as the donor meets the residency requirements and applies on time. 

"Let's consider some examples:

"Tina heard on the news that there are 5,000 people waiting for a kidney transplant in her state. She called a transplant center and asked that they give her kidney to anyone who needs it, if she is approved to donate. Tina is a non-directed donor because she has no intended recipient. 

"Anthony read about a stranger's search for a living kidney donor on Facebook. Though he doesn't know the person, he would like to be evaluated as a potential donor for them. He is a directed donor because he has an intended recipient, even though he doesn't know them personally. 

"Jacqueline wants to donate to a member of her church without revealing her identity to the recipient. She is a directed donor because she has an intended recipient, though she wants to remain anonymous. 

"Esther wanted to donate to her husband, but they are not a good match. Through kidney paired donation, she donates to a stranger, and the stranger's loved one donates to her husband. Because Esther has an intended recipient who received a transplant through her donation, she is a directed donor. 

"Devin was being evaluated as a potential living donor to his uncle when his uncle received a deceased donor transplant. Devin decided he was still willing to donate even though his uncle no longer needed his organ, and asked the transplant center to give his kidney to anyone on the waitlist. Devin is now a non-directed donor because he does not have an intended recipient anymore. 

"Which of these donors can apply to NLDAC without their recipient's information? Tina and Devin, because they are donating without an intended recipient. Anthony, Jacqueline, and Esther can apply with their intended recipient, and NLDAC will keep the donor and recipient's information private. Esther would apply with her originally intended but incompatible recipient, her husband."

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

All my posts on NLDAC:  https://marketdesigner.blogspot.com/search?q=nldac&max-results=20&by-date=true

In defense of online anonymity, by Mike Luca in the WSJ

Mike Luca writes about anonymity as a feature of market design, in the WSJ:

In Defense of Online Anonymity. Lack of transparency on the internet may help fuel toxic dialogue, but it also encourages honest feedback and protects people against discrimination  By Michael Luca

"Anonymity on the internet has gotten a bad rap lately, and for good reason. The shield of anonymity has contributed to a toxic online ecosystem that is too often marred by cyberbullying, misinformation and other social ills. Removing anonymity has the potential to foster accountability and trust. 

...

"But this overlooks an important fact: The internet needs some anonymity.  ...The relatively anonymous nature of online transactions removed markers of race, gender and other factors that sometimes were used to discriminate against customers in conventional transactions.

...

"As an economist studying the design of markets and platforms, I concentrate on whether companies are creating ecosystems that are both efficient and inclusive. My collaborators Ben Edelman, Dan Svirsky and I set out to understand the implications of Airbnb’s design choices. In 2015 we conducted an audit study, building on an approach used to analyze labor markets and offline rental markets. We sent identical booking requests to thousands of hosts, varying only the user’s name—using some names that birth records show to be more common among Black Americans and other names that are more common among white Americans. We found that the Black “guests” were roughly 16% less likely to be accepted, and the discrimination was similar whether hosts had only a single listing or multiple ones.

"In response to our research, Airbnb commissioned a task force and then gradually reintroduced anonymity at various steps in the process. Since 2018, hosts have been required to make a decision about whether to accept or reject a guest before seeing their picture. In Oregon, the site has been spurred to go further by a lawsuit from Airbnb customers there who alleged discrimination on the basis of their names. Since January, the names of Oregon-based guests are no longer disclosed before owners accept their bookings.

...

"Of course, anonymity needs to be implemented thoughtfully and comes with its own risks; the same anonymity that can help to protect honest feedback might protect illegitimate feedback as well. My research with Giorgos Zervas, published in the journal Management Science in 2016, found evidence of businesses extensively engaging in fake reviews, enabled in part by the shield of anonymity. Work by economists Dina Mayzlin, Yaniv Dover and Judy Chevalier, published in the American Economic Review in 2014, found that fake reviews are more common when there is less verification of reviews. Anonymity can also make us feel more disconnected even while exchanging views."

Sperm donors used to be anonymous. Technology has made that obsolete

Here's a representative story from the NY Times:

Sperm Donors Can’t Stay Secret Anymore. Here’s What That Means.  By Susan Dominus

"To be the biological child of an anonymous sperm donor today is to live in a state of perpetual anticipation. Having never imagined a world in which donors could be tracked down by DNA, in their early years sperm banks did not limit the number of families to whom one donor’s sperm would be sold — means that many of the children conceived have half-siblings in the dozens. There are hundreds of biological half-sibling groups that number more than 20, according to the Donor Sibling Registry, where siblings can find one another, using their donor number. Groups larger than 100, the registry reports, are far from rare.
"Because of the increasing popularity of genetic testing sites like 23andMe, in the past two or three years a whole new category of people, including those who never knew they were conceived via donor insemination, are reaching out to half siblings who may have already connected with others in their extended biological family. 
...
"Over time the adoption movement popularized the principle that individuals had a right to know their biological roots, and lesbian couples and single mothers, dominating ever more of the sperm banks’ market, called for greater transparency. In the early 2000s, California Cryobank offered, for a premium fee, an option for parents to choose a donor who agreed not just to be contacted when the offspring turned 18 but to respond in some fashion (though still anonymously if that was his preference).

By 2010, experts in reproductive technology were starting to note that internet searchability, facial-recognition software and the future of DNA testing would soon render anonymity a promise that the sperm banks could no longer keep. Since 2017, California Cryobank has stopped offering anonymity to its new donors. Donors now must agree to reveal their names to their offspring when they turn 18 and to have some form of communication to be mediated, at first, by the bank."

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

And here's an accompanying story, by a man who has now met and photographed many of his half-sibs.

A Family Portrait: Brothers, Sisters, Strangers

Photo essay by Eli Baden-Lasar

Text by Eli Baden-Lasar as told to Susan Dominus

In Britain, National Sperm Bank stops recruiting donors

The Telegraph has the story: National Sperm Bank stops recruiting donors after just two years

"The National Sperm Bank (NSB) was a joint project run by the National Gamete Donation Trust (NGDT) and the Birmingham Women’s Fertility Centre and launched in October 2014 with a £77,000 grant from the Department of Health.

It was hoped the service would plug the gap in the shortage of donors and prevent couples being forced to look for sperm from overseas.

The bank hoped to be self-sufficient within a year but because the full donor process takes up to 18 months they were unable to generate enough income to keep going.

Although they only managed to recruit seven viable donors, experts said it was the business model that proved their ultimate downfall.

...

"“For every 100 men who enquire about being a donor, only 4 or 5 are ultimately accepted.

The Human Fertilisation and Embryology Authority estimate that 2,000 children are born every year in the UK using donated eggs, sperm or embryos and there are around licensed UK clinics performing sperm donor insemination.

But the majority of clinics are based in London and the south-east of England and treatment can be expensive. The cost of donor sperm from the UK's largest sperm bank, the London Sperm Bank, is currently £950. In contrast the National Sperm bank was proposing to charge £300 per insemination.

...

"The bank has also suffered because since 2005 the children of donors have a right to learn the identity of their fathers when they turn 18. The numbers of men willing to donate sperm has fallen dramatically since their anonymity was removed."

Auction of bitcoins seized from Silk Road

FOR SALE

29,656.51306529 bitcoins

Frequently Asked Questions (Updated 06/19/14)

The US Marshals neglect to mention the auction rules, for their June 27 auction of bitcoins seized from Silk Road. I surmise that it is a first price sealed bid auction, but it's a little interesting that is regarded so clearly as the default that nothing needs to be said...

They were earlier in the news for cc'ing rather than bcc'ing all the registered bidders in what was supposed to be an anonymous auction:

US Marshal CCs, rather than BCCs, those interested in anonymous Bitcoin auction
A simple CC/BCC mistake embarrasses agency in charge of selling off Silk Road funds.

Saving babies with no questions asked

Sign at a Cambridge, MA fire station, September 2013

Fertility tourism and the British ban on paying egg donors

The fertility treament covered by Britain's National Health Service causes many Britons to seek treatment privately, elsewhere in Europe, the London Times reports: 'Thousands of Britons' travel abroad for IVF, research finds.

"Restricted access to fertility treatment on the NHS, the high cost of private therapy at domestic clinics and a serious shortage of donated eggs are driving couples to visit overseas clinics for help in starting a family. "
...
"IVF patients who need donated eggs are particularly likely to travel. Domestic donors are in short supply because of the removal of anonymity and tough rules against selling eggs.Spain and the Czech Republic are prime destinations, due to laws allowing donors to be paid €900 (£765) and €500 respectively for eggs. British donors get no more than £250 in expenses. "

Now the ban on payment for eggs is being reconsidered:

Pay donors to end the shortage of IVF eggs, says watchdog
"A longstanding ban on selling sperm and eggs should be reconsidered to address a national shortage of donors, the head of the Government’s fertility watchdog says. Payments to donors could cut the number of childless couples travelling abroad for treatment, Lisa Jardine, of the Human Fertilisation and Embryology Authority, told The Times. The removal of anonymity for donors in 2005 and strict rules against payments have provoked a crisis in fertility treatment, forcing many couples to wait years for the therapy they need to start a family. A recent study showed that access to eggs and sperm was the main reason why hundreds of British couples became “fertility tourists” each month."
...
"Her move will raise concerns about a market in human tissue and exploitation of women as egg donation is invasive and involves an element of risk. In countries that allow payment, such as the United States, Spain and Russia, young women often donate to wipe out debts or to fund university fees. Professor Jardine said that the law already treated eggs, sperm and embryos differently from other tissues, so there was no danger of setting a precedent for the sale of organs such as kidneys. Payment would also ensure that more women were treated in licensed domestic clinics, rather than in countries with less stringent regulations. “I’m not saying the decision arrived at before I became chair wasn’t the right one at the time,” she said. “But given the evidence that egg shortage is driving women overseas, I feel a responsibility to look at it again.” "

The Economic Logic of Anonymity and Pseudonymity

My previous post talks about my recent NBER working paper with Muriel Niederle and Utku Unver. Earlier this week I received an email that this paper was featured on another blog, Economic Logic. The email was signed "Economic Logician." And when I looked carefully at the blog itself (which I had read before; it's one of the economics blogs I have on my bookmark list), I couldn't find any identifying information about the blogger, even after clicking on the links through which blog owners often identify themselves.

So I replied to the email asking "Are you blogging anonymously, incidentally? (May I ask why?)"

I received the following reply: "Yes, I remain anonymous. This allows me more liberty in my writing, and I hope the blog will gather reputation on its own merit, instead of being attached to a name."

This got me thinking about the market design aspects of anonymity , and its not so close relative pseudonymity. When I asked EL about his/her anonymity, I was referring of course to the fact that I don't know who he/she is, what his/her day job is, which personal pronoun is appropriate, etc. But when EL speaks of the blog developing a reputation, he/she is referring to the fact that the posts are under the repeated-use pseudonym Economic Logician (with respect to which the name of the blog is an eponym), so that each post can both rely on and help establish the reputation of the same unidentified/pseudonymous person who wrote the previous posts.

Lots of internet markeplaces allow pseudonymous usernames, and still manage to foster reputation building and trust. (In an earlier post I wrote about the redesign of eBay's reputation system from one in which feedback could only be identified or pseudonymous to one in which it can also be anonymous: "ENGINEERING TRUST - RECIPROCITY IN THE PRODUCTION OF REPUTATION INFORMATION," - by Gary Bolton, Ben Greiner, and Axel Ockenfels. ) That paper notes how being able to identify who left feedback led to reciprocal feedback, either jointly positive or jointly negative, which reduced the informativeness of certain kinds of feedback.

There are other contexts in which anonymity is encouraged or allowed (and not just in comments to blogs). The refereeing of academic papers for publication is an example in which we seem to believe that the benefits (increased frankness) of anonymity may overcome the costs (e.g. an increase in self-serving reviews).

Some journals have double-blind refereeing, in which the authors as well as the referees may choose to remain anonymous during the review process (e.g. by deleting their names from the cover sheet, and also not posting the paper where Google can find it). Google now essentially prevents journals from enforcing anonymity on authors, since it gives authors a way to identify themselves if they wish, despite the requirement that their names and affiliations may not appear on the submitted paper. I think that preventing referees from knowing who the authors are would be a mixed blessing; it would level the playing field in certain desirable ways, but it might also remove information that would be valuable in evaluating the paper. (For example, if you read a paper saying that, on balance, the conclusions of Roth (1977) need to be revisited, it might be useful for you to know if Roth is one of the authors.)

Of course, marketplace rules may allow participants to be anonymous from some parties and not from others, and internet privacy rules are concerned with who can choose how individuals are identified. (See this nice take on the famous New Yorker cartoon about anonymity on the internet.)

So, anonymity has its uses, as does identity, and pseudonymity has some of the advantages and disadvantages of each. I'll keep blogging under my natural name for the time being, since, especially when my posts are unclear or incomplete, they may get some helpful context from the fact that they are linked to me and the work I do .

Giving anonymously, through an intermediary

I recently blogged about a service set up to enable people to give (relatively) small gifts anonymously, Giving anonymously, for a fee .

Larger gifts, e.g. to university endowments, are also often given anonymously. But "anonymous" is a relative term, and often someone at the gift-receiving institution knows who the donor is. (Here at Harvard, my HBS office is in a building called Baker Library, whose southern side now sports a new wing called Bloomberg. It was anonymous for a while; all we knew was that the donor wished his identity to remain unknown until he had completed his election for a second term as mayor of New York.)

Now a number of gifts to universities have been made behind a deeper than usual veil of anonymity: Mystery donors give over $45M to 9 universities.

"A mystery is unfolding in the world of college fundraising: During the past few weeks, at least nine universities have received gifts totaling more than $45 million, and the schools had to promise not to try to find out the giver's identity.
One school went so far as to check with the IRS and the Department of Homeland Security just to make sure a $1.5 million gift didn't come from illegal sources.
"In my last 28 years in fundraising ... this is the first time I've dealt with a gift that the institution didn't know who the donor is," said Phillip D. Adams, vice president for university advancement at Norfolk State University, which received $3.5 million.
The gifts ranged from $8 million at Purdue to $1.5 million donated to the University of North Carolina at Asheville. The University of Iowa received $7 million; the University of Southern Mississippi, the University of North Carolina at Greensboro and the University of Maryland University College got $6 million each; the University of Colorado at Colorado Springs was given $5.5 million; and Penn State-Harrisburg received $3 million.
It's not clear whether the gifts came from an individual, an organization or a group of people with similar interests. In every case, the donor or donors dealt with the universities through lawyers or other middlemen. Some of the money came in cashier's checks, while other schools received checks from a law firm or another representative.
All the schools had to agree not to investigate the identity of the giver. Some were required to make such a promise in writing."

Giving anonymously, for a fee

How to give money to a friend anonymously (and be sure that it is received)? Try Giving Anonymously, established "to facilitate giving in such a way that "money" does not hinder friendship." They will send along your gift via their own check, and send you a copy of the cancelled check.

Anonymity when giving charity has a long history. It plays a big role in Jewish thought, for example, as codified by the 12th century scholar Rabbi Moshe ben Maimon (aka Maimonides, or the Rambam).

When looking at repugnant transactions, often the addition of money is what arouses repugnance (e.g. kidney donations don't arouse the repugnance of kidney sales). Something like that seems to be at work here; you might like to give someone a gift, they might need and want one, but the complications of giving and receiving money from a friend might prevent an otherwise mutually desired transaction from going through.

What is the price of anonymity? Doing it through this particular anonymizing service costs $2.50 + 2.5% of your gift.

Update (and sign of the hard times): Today's Boston Globe has a story on a related theme: Colleagues pitch in to ease the pain.
"As the economic downturn persists, specialists who follow workplace trends say more employees are trying to save colleagues' jobs through voluntary pay cuts or freezes, furloughs, and donations. "