Transplantable organs: the worst and best systems

A grim story is playing out as European investigators finish an investigation: The NY Times reports
"A two-year international inquiry has concluded that the prime minister of Kosovo led a clan of criminal entrepreneurs whose activities included trafficking in organs extracted from Serbian prisoners executed during the Kosovo conflict in 1999."


This story is the takeoff point for another, much more hopeful story at Slate, pointed out to me by Benjamin Kay of UCSD: The Kidney Trade: Can economists make the system for organ transplants more humane and efficient?



It touches on kidney exchange, and compensation for donors, among other things.

Waiting lists

In the Chronicle of Higher Education, Toni Adleberg, a recent NYU graduate compares her experiences on the waiting list for graduate admissions, and the wait for a new liver: They'll Just Have to Wait.

Organ donation legislation in California

Judd Kessler (who you could hire this year) writes about changes in CA law regarding organ donation, including live donation:

On Tuesday, October 5, California Governor Arnold Schwarzenegger ceremonially signed new organ donor legislation. There are two new bills that make a variety of changes to policy for both live and deceased organ donation in California. Here is a summary.


SB 1395 makes two changes. First, it authorizes the creation of an:
"Altruistic Living Donor Registry" where individuals can state their willingness to be a live kidney donor. (The bill allows for the possibility of extending the registry to other organs and tissues in the future.) The living donor registry would make information about potential donors available to facilitate pairwise exchanges and donor chains. According to the bill: "(a) ... The donor registry shall be designed to promote and assist live kidney donations, including donor chains, paired exchanges, and nondirected donations. The registrar shall be responsible for developing methods to increase the number of donors who enroll in the registry. (b) The registrar shall make available to the federally designated organ procurement organizations (OPOs) and transplant centers in California information contained in the registry regarding potential altruistic living donors. This information shall be used to expedite a match between identified organ donors and potential recipients."

Second, SB 1395 changes how the department of motor vehicles asks people whether they would like to register to be an organ and tissue donor upon death (i.e. a deceased donor). Currently the DMV allows potential donors to opt in. The application for a new or renewal driver's license or ID card has space to indicate a willingness to join the registry. Starting July 1, 2011, the donor registration question will require an "active" or "mandated" choice. According to the bill, the application will now: "contain a space for the applicant to enroll in the Donate Life California Organ and Tissue Donor Registry. The application shall include check boxes for an applicant to mark either (A) Yes, add my name to the donor registry or (B) I do not wish to register at this time." In addition, the DMV: "shall inquire verbally of an applicant applying in person ... at a department office as to whether the applicant wishes to enroll in the Donate Life California Organ and Tissue Donor Registry."

In Governor Schwarzenegger's speech at the bill signing he called this change to mandated choice "the next best thing" to an opt out system, where individuals would be deceased organ donors by default. He said an opt out system had been suggested to him by Steve Jobs, who recently received a liver transplant and was also in attendance at the bill signing, but that an opt-out system was not plausible due to constitutional concerns. In the Governor's words: "And we have to give [Steve Jobs] a lot of credit, because he came back, apparently from Europe or from somewhere where he called me and he said that, you know, in Europe, in Spain, they have no waiting list because you can only opt out; that if you don’t opt out then you are automatically on a donor list. So we tried to copy the same thing and we talked about that seven months ago. But our Constitution in the United States is different than the Spanish Constitution, so we could not legally do that. So we did the next best thing."

Another bill generated protections for employees who want to be living organ donors or bone marrow donors. SB 1304 requires private employers to provide paid leave for their employees who are organ donors (up to 30 days) or bone marrow donors (up to 5 days) and prevents private employers from blocking such donations by its employees or punishing them for donating. State employees already had this paid leave.

Future organ replacement

I expect that your grandchildren will have the luxury of viewing all the work on kidney exchange and transplantation generally as primitive medicine ("Grandpa, they used to take an organ from one person and sew it into another??").

At the XXIII International Congress of the Transplant Society next month there will be some discussion of Stem Cells and Regeneration, along with more prosaic, current clinical issues.

A small step towards that future is reported in Science: Rats Breathe With Lab-Grown Lungs
and in the Boston Globe: N.E. researchers create functioning lung tissue--A vital step in the quest to build organs.

From the Globe: "Two teams of researchers from New England have built living, breathing lung tissue in the laboratory — feats of engineering that could speed up the development of new drugs and bring researchers a step closer to the tantalizing dream of growing replacement lungs for patients."

In the meantime, I'm cheered by the progress we're making in primitive medicine, back in these days at the dawn of the 21st century (see here and, more generally, here, or my post last summer at which a prize was awarded to Mike Rees for some of that progress).

HT: Steve Leider

Misc. organ transplant links

A Review of Organ and Tissue Donation Procedures by the Royal Australasian College of Physicians nicely summarizes some of the different ways deceased donor organs are dealt with around the world.

The ‘blood group O problem’ in kidney transplantation—time to change? discusses the Eurotransplant Kidney Allocation System, which apparently allows some O kidneys to go to patients who aren't type O.

Mike Rees' revolution of non-simultaneous non-directed donor chains continues to bear fruit in unexpected ways: LOYOLA PROGRAM A RADICAL SHIFT IN LIVING DONOR KIDNEY TRANSPLANTS
"In a first, four people step forward to donate kidneys to complete strangers across the country with no strings attached."...
"It's extremely rare when someone asking for nothing in return steps forward at a hospital and offers to donate a kidney to a complete stranger.
What's rarer still is what has happened at Loyola University Medical Center -- four people have stepped forward and offered to donate kidneys to four complete strangers and none have asked for a thing in return.
"This is completely unique and totally unheard of," said Garet Hill, founder of the nonprofit National Kidney Registry, which coordinated the donations. "We have never had four donors from one institution come forward at one time to offer up kidneys for donation with no strings attached."
The selfless acts by the four have helped Loyola launch its Pay-it-Forward Kidney Transplant Program, the first of its kind in the Midwest, and the largest number of altruistic donors to ever begin such a program in the United States."

Here's a collection of kidney exchange stories and videos from MSNBC, some rather old: http://article.wn.com/view/2010/05/04/Kidney_swap_program_posts_high_success_rate/

And here's a live donor story: From Fear To Elation: Prepping To Be An Organ Donor

Deceased donor allocation policies are also a very big deal. Alex Tabarrok at MR has a thought provoking post on one aspect of the debate: Optimizing Kidney Allocation: LYFT for LIFE which touches on the issue of how it's often difficult to make changes in health care policy that aren't Pareto improvements, even if they are improvements by other measures.

Organ donor registry mishap in Britain

The Telegraph reports: Organs removed without consent after IT blunder

"The records of 800,000 people were affected by an error that meant their wishes about the use of their organs after death were wrongly recorded.
An investigation has found that 45 of those for whom wrong records were stored have since died – and in approximately 20 cases organs were taken where consent had not been given.

Donors can give permission for any of their organs to be taken, or provide more specific agreements. A glitch in the system more than a decade ago removed the distinctions expressed by people.
Many donors have strong views about what can be taken. Often consent is not given for eyes to be removed, while some people who agree to donate organs are uncomfortable with the idea of their body tissue being used in research.
Joyce Robins, from the pressure group Patient Concern said: "This Government has got an absolutely dreadful record when it comes to data, but it is absolutely horrific that such sensitive details were handled in such a careless way."
The NHS is about to contact approximately 20 families who allowed organs to be taken from their relations after being misinformed about what consent had previously been given.
It is illegal to remove organs without prior consent from the person who died or their next of kin. A view is sought from relations before decisions are taken. In the cases where errors were made, it is understood that families were asked for permission, but their decisions were based on misinformation about the wishes of their relations.
After detecting the fault last year, NHS Blood and Transplant, which holds the organ donation register, was able to correct 400,000 of the flawed records. But 400,000 more people will shortly be contacted to be told that the wrong information may be held about them, and asked to provide consent again.
Until fresh consent is obtained, organs will not be taken from any of those people in the event of death. "

Misc. organ transplant commentary and news

The Times of London reports on how one deceased donor can donate many organs: How one organ donor can save the lives of nine people
There is a worrying shortage of organ donors — and gaining consent from grieving relatives is a delicate task

A living donor is unhappy with the way they have been treated: The Hypocrisy of OPTN's Committee Goals "UNOS has had the OPTN contract since 1986 (yet they cared so little for us they didn't even collect LD social security numbers til 1994); they've had policy to collect follow-up data on living donors since 2000 (but the transplant centers were 50-80% non-compliant), yet it wasn't until 2005 they decided it should be "clinically relevant and validated". And since 2005, independent researchers, UNOS officials and SRTR personnel have all criticized UNOS' data collection as 'woefully inadequate', and worthless as far as any meaningful analysis goes. "

A columnist quotes Adam Smith in support of making compensation for donors legal: Dying people shouldn’t be beggars "It is not from the benevolence of the butcher, the brewer or the baker that we expect our dinner, but from their regard to their own interest. ... Nobody but a beggar chooses to depend chiefly upon the benevolence of his fellow-citizens."
—Adam Smith, "Wealth of Nations"


A living donor is declined by a hospital: Kidney Donation Canceled Because Donor and Recipient ‘Bonded’ and THE MATCH (UN)MAKERS: Why did Einstein halt life-saving transplant? both report a hospital's decision not to accept a donation from a donor who had met his potential recipient via the matchingdonors.com website. The WSJ piece says, by way of of explanation: "As the WSJ has reported, hospitals may be reluctant to agree to this kind of altruistic donation, fearing that donors may have been paid or that participants won’t make it through the rigorous psychological evaluation process, or because the practice sidesteps the official organ waiting lists."

Alex Tabarrok at MR reports on Changing Views on Organ Prohibition and reports that the anthropologist Nancy Scheper-Hughes, who has studied black markets for organs, is in favor of careful trials of ways to ethically compensate organ donors.

California, New York mull changes to organ donor laws
"A California bill may soon create a living donor registry -- the first for any state.
Spurred by Apple co-founder and transplant recipient Steve Jobs, the bill has gained support from major politicos, including California Gov. Arnold Schwarzenegger, and is expected to land on his desk this summer.
Meanwhile, on the East Coast, a far more sweeping transplant bill would make every person an organ donor who doesn't opt out. This would create an organ donation system in New York similar to the ones used in several European countries, but the measure is already facing opposition."
The California bill seems to be aimed primarily at promoting kidney exchange...

A living lung donor is running today in the Boston marathon

A stranger, a gift, and a marathon miracle: Ellyn Cohen needed a lung to live, then a woman she’d never met offered hers

"It was an unusual act of kindness. Last year, out of 1,661 lung transplants in the United States, only one came from a living donor. In 2008, the number of living lung donors was zero, according to the Organ Procurement and Transplantation Network, the government agency that coordinates national waitlists for organ transplants. And in 2004, the year Greene made her donation, she was one of just 28 living lung donors out of 1,172 transplants. That year, 492 people died while waiting for a lung.
As uncommon as living lung donors are, it is even less common for the organ to come from a stranger. And the way Greene found out about Cohen’s plight — from a mass e-mail forwarded by a friend — makes the story all the more incredible, said Sean Fitzpatrick, spokesman for the New England Organ Bank, the federally designated nonprofit organization that identifies deceased donors and recovers organs and tissues for transplants in the region."
...
"A few weeks after the surgery, Greene was playing tennis. The four lobes that remain in her two lungs are one less than a normal healthy person has. But her doctors have told her that her lungs work better than those of many healthy people. Two years ago, Greene started running. She decided to do the marathon to mark her half-century milestone. She got a charity number from her spouse, Angela Cenzalli, who works for the Special Olympics. But she will wear the shirt of the New England Organ Bank, to draw attention to the plight of the more than 1,800 people in the country awaiting lung transplants.
“If more people registered as donors we wouldn’t have to take parts out of living bodies,’’ Greene said. “I’m not asking people to donate their organs when they are alive.’’
She is not expecting to finish the race in less than five hours.
“I like to think that I’ll be fairly high up among the four-lobe people,’’ she smiled."

Presumed consent and deceased donor organ donation

Kim Krawiec writes: "Duke sociologist (and Crooked Timber blogger) Kieran Healy visited my Taboo Trades and Forbidden Markets seminar this week to discuss his book, Last Best Gifts (University of Chicago Press, 2006) -- a study of the social organization of exchange in human blood and organs – as well as his research on presumed consent laws (See, Do Presumed Consent Laws Raise Organ Procurement Rates? DePaul Law Review, 55:1017–1043 (2006)) (PDF). Healy has also written several other articles about gift and market exchange in human blood and organs and, in addition, studies the moral order of market society (See, for example, Marion Fourcade and Kieran Healy, Moral Views of Market Society. Annual Review of Sociology 33:285–311 (2007) (PDF.))"
...
[The article on presumed consent] "is a comparative study of rates of cadaveric organ procurement in seventeen OECD countries between 1990 and 2002. Those in the United States (and other countries, including the UK) concerned with insufficient cadaveric donor rates frequently advocate a switch to a presumed-consent legal regime (as opposed to the US informed consent regime), as a quick fix to the problem of under-supply. This seems logical enough – in other contexts we have reason to believe that alterations to the default rule, and particularly from an opt-in to an opt-out regime, may meaningfully impact behavior. This is especially plausible when the law functions as some sort of signaling device about societal norms or when, as in the case of organ donation, choosing involves scenarios – death – that one prefers not to contemplate, perhaps causing inertia.
But in the case of cadaveric organ donation an additional argument is typically put forward in favor of presumed consent: the removal of next of kin from the decision-making process. Though the Revised Uniform Anatomical Gift Act specifies that family consent or concurrence is not required, the reluctance of procurement organizations in the U.S. to proceed with organ retrieval against next-of-kin wishes has been generally recognized.
Yet Healey finds that presumed consent laws do not make a material difference to the procurement rate. Importantly, presumed consent laws typically do not remove the next of kin from the procurement process. Although presumed-consent countries have somewhat better procurement rates on average than informed-consent countries, Healy concludes that this is not because of any direct effect of the law on individual choices. Instead, improved donation rates appear driven by substantial investment in the logistics of organ procurement – better training, clear delegation of responsibility, and a strong presence in hospitals, for example. "

Living Liver and Kidney Donation

The American Journal of Transplantation has assembled a "virtual issue" of articles they have published on various aspects of live donation, including kidney exchange. It seems to be ungated.

Living Liver and Kidney Donation

Guest Editor: Dr. Jonathan Bromberg
"This virtual issue of the American Journal of Transplantation is focused on living donation. For practical purposes, the articles are restricted to only liver and kidney donation. It would not be an overstatement to say that donation has probably been the number one issue to dominate the field for the last decade, as organ quality and availability determine all activities in transplantation. The breadth of importance and ramifications of donation are reflected in the wide variety of articles and topics that cover this area of interest. Novel sources of donors, such as altruistic, anonymous, and non-directed donation among others are covered in the first section. While considered even unusual a few years ago, many of these sources are now firmly partly of the mainstream of living donation. Exchanges, swaps, chains, and dominos are included in the second section, reflecting the evolution of the field as ever more complex donor and recipient algorithms are implemented, and their attendant ramifications on quality, cost, and outcomes. The third section covers organ utilization and outcomes, with an emphasis on matching the optimal donor with the correct recipient, and comparing deceased to living donor organs. The fourth section covers regulatory issues at the national and local levels, and their influence on donation and outcomes. The fifth section comprises issues relating to the donor and donor safety. The work-up process, safeguards, operative techniques, short term outcomes, and very long term outcomes are major issues the have dominated recent trends. The sixth and last section covers educational issues as they related to donor and family knowledge and attitudes toward donation, and that affects donation rates. These reports should provide the reader with a comprehensive view of issues in living liver and kidney donation, and the diverse paths taken that have moved the field forward."

Novel Donor Sources:
Twenty-Two Nondirected Kidney Donors: An Update on a Single Center's ExperienceC. L. Jacobs, D. Roman, C. Garvey, J. Kahn, A. J. Matas
Altruistic Living Donors: Evaluation for Nondirected Kidney or Liver DonationM.D. Jendrisak, B. Hong, S. Shenoy, J. Lowell, N. Desai, W. Chapman, A. Vijayan, R.D. Wetzel, M. Smith, J. Wagner, S. Brennan, D. Brockmeier, D. Kappel
Living Anonymous Liver Donation: Case Report and Ethical JustificationL. Wright, K. Ross, S. Abbey, G. Levy, D. Grant
Successful Expansion of the Living Donor Pool by Alternative Living Donation ProgramsJ. I. Roodnat, J. A. Kal-van Gestel, W. Zuidema, M. A. A. van Noord, J. van de Wetering, J. N. M. IJzermans, W. Weimar
Elective Surgical Patients as Living Organ Donors: A Clinical and Ethical InnovationG. Testa, P. Angelos, M. Crowley-Matoka, M. Siegler
Kidney Donor Exchanges, Chains, and Dominos:
A Comparison of Populations Served by Kidney Paired Donation and List Paired DonationS. E. Gentry, D. L. Segev, R. A. Montgomery
The Dutch National Living Donor Kidney Exchange ProgramM. de Klerk, K. M. Keizer, F. H. J. Claas, M. Witvliet, B. J. J. M. Haase-Kromwijk, W. Weimar
Characterization of Waiting Times in a Simulation of Kidney Paired DonationD. L. Segev, S. E. Gentry, J. K. Melancon, R. A. Montgomery
Attitudes of Minority Patients with End-Stage Renal Disease Regarding ABO-Incompatible List-Paired ExchangesP. D. Ackerman, J. R. Thistlethwaite Jr, L. F. Ross
Incompatible Kidney Donor Candidates' Willingness to Participate in Donor-Exchange and Non-directed DonationA. D. Waterman, E. A. Schenk, A. C. Barrett, B. M. Waterman, J. R. Rodrigue, E. S. Woodle, S. Shenoy, M. Jendrisak, M. Schnitzler
Utilizing List Exchange and Nondirected Donation through 'Chain' Paired Kidney DonationsA. E. Roth, T. Sönmez, M. U. Ünver, F. L. Delmonico, S. L. Saidman
Expanding Kidney Paired Donation Through Participation by Compatible PairsS. E. Gentry, D. L. Segev, M. Simmerling, R. A. Montgomery
Successful Three-Way Kidney Paired Donation with Cross-Country Live Donor Allograft TransportR. A. Montgomery, S. Katznelson, W. I. Bry, A. A. Zachary, J. Houp, J. M. Hiller, S. Shridharani, D. John, A. L. Singer, D. L. Segev
The Roles of Dominos and Nonsimultaneous Chains in Kidney Paired DonationS. E. Gentry, R. A. Montgomery, B. J. Swihart, D. L. Segev
Asynchronous, Out-of-Sequence, Transcontinental Chain Kidney Transplantation: A Novel ConceptF. K. Butt, H. A. Gritsch, P. Schulam, G. M. Danovitch, A. Wilkinson, J. Del Pizzo, S. Kapur, D. Serur, S. Katznelson, S. Busque, M. L. Melcher, S. McGuire, M. Charlton, G. Hil, J. L. Veale
Clinical Outcomes of Multicenter Domino Kidney Paired DonationY. J. Lee, S. U. Lee, S. Y. Chung, B. H. Cho, J. Y. Kwak, C. M. Kang, J. T. Park, D. J. Han, D. J. Kim
Organ Utilization and Outcomes:
Living-Donor Liver Transplantation for HepatoblastomaM. Kasahara, M. Ueda, H. Haga, H. Hiramatsu, M. Kobayashi, S. Adachi, S. Sakamoto, F. Oike, H. Egawa, Y. Takada, K. Tanaka
Living Donor Liver Transplantation for Biliary Atresia: A Single-Center Experience with First 100 CasesC.-L. Chen, A. Concejero, C.-C. Wang, S.-H. Wang, C.-C. Lin, Y.-W. Liu, C.-C. Yong, C.-H. Yang, T.-S. Lin, Y.-C. Chiang, B. Jawan, T.-L. Huang, Y.-F. Cheng, H.-L. Eng
Association Between Waiting Times for Kidney Transplantation and Rates of Live DonationD. L. Segev, S. E. Gentry, R. A. Montgomery
Regional and Racial Disparities in the Use of Live Non-Directed Kidney DonorsD. L. Segev, R. A. Montgomery
Recipient Morbidity After Living and Deceased Donor Liver Tranasplantation: Findings from the A2ALL Retrospective Cohort StudyC. E. Freise, B. W. Gillespie, A. J. Koffron, A. S. F. Lok, T. L. Pruett, J. C. Emond, J. H. Fair, R. A. Fisher, K. M. Olthoff, J. F. Trotter, R. M. Ghobrial, J. E. Everhart
Incidence and Severity of Acute Cellular Rejection in Recipients Undergoing Adult Living Donor or Deceased Donor Liver TransplantationA. Shaked, R. M. Ghobrial, R. M. Merion, T. H. Shearon, J. C. Emond, J. H. Fair, R. A. Fisher, L. M. Kulik, T. L. Pruett, N. A. Terrault
Resource Utilization of Living Donor Versus Deceased Donor Liver Transplantation Is Similar at an Experienced Transplant CenterJ. C. Lai, E. M. Pichardo, J. C. Emond, R. S. Brown Jr.
Organ Donation and Utilization in the United States: 1998–2007J. E. Tuttle-Newhall, S. M. Krishnan, M. F. Levy, V. McBride, J. P. Orlowski, R. S. Sung
Unique Early Gene Expression Patterns in Human Adult-to-Adult Living Donor Liver Grafts Compared to Deceased Donor GraftsJ. de Jonge, S. Kurian, A. Shaked, K. R. Reddy, W. Hancock, D. R. Salomon, K. M. Olthoff
Regulatory:
Incentive Models to Increase Living Kidney Donation: Encouraging Without CoercingA. K. Israni, S. D. Halpern, S. Zink, S. A. Sidhwani, A. Caplan
Limiting Financial Disincentives in Live Organ Donation: A Rational Solution to the Kidney ShortageR. S. Gaston, G. M. Danovitch, R. A. Epstein, J. P. Kahn, A. J. Matas, M. A. Schnitzler
Public Attitudes Toward Incentives for Organ Donation: A National Study of Different Racial/Ethnic and Income GroupsL. E. Boulware, M. U. Troll, N. Y. Wang, N. R. Powe
The Association of State and National Legislation with Living Kidney Donation Rates in the United States: A National StudyL. E. Boulware, M. U. Troll, L. C. Plantinga, N. R. Powe
The Evolution and Direction of OPTN Oversight of Live Organ Donation and Transplantation in the United StatesR. S. Brown, Jr, R. Higgins, T. L Pruett
Stimulus for Organ Donation: A Survey of the American Society of Transplant Surgeons MembershipJ. R. Rodrigue, K. Crist, J. P. Roberts, R. B. Freeman Jr., R. M. Merion, A. I. Reed
Donor Procedures, Outcomes and Safety:
Obesity in Living Kidney Donors: Clinical Characteristics and Outcomes in the Era of Laparoscopic Donor NephrectomyJ. K. Heimbach, S. J. Taler, M. Prieto, F. G. Cosio, S. C. Textor, Y. C. Kudva, G. K. Chow, M. B. Ishitani, T. S. Larson, M. D. Stegall
Laparoscopic Procurement of Kidneys with Multiple Renal Arteries is Associated with Increased Ureteral Complications in the RecipientJ. T. Carter, C. E. Freise, R. A. McTaggart, H. D. Mahanty, S.M. Kang, S. H. Chan, S. Feng, J. P. Roberts, A. M. Posselt
Pre-donation Assessment of Kidneys by Magnetic Resonance Angiography and Venography: Accuracy and Impact on OutcomesS. A. Ames, M. Krol, K. Nettar, J. P. Goldman, T. M. Quinn, D. M. Herron, A. Pomp, J. S. Bromberg
Long-Term Consequences of Live Kidney Donation Follow-Up in 93% of Living Kidney Donors in a Single Transplant CenterJ. Gossmann, A. Wilhelm, H.G. Kachel, J. Jordan, U. Sann, H. Geiger, W. Kramer, E.H. Scheuermann
More on Parental Living Liver Donation for Children with Fulminant Hepatic Failure: Addressing Concerns About Competing Interests, Coercion, Consent and Balancing ActsA. Spital
Predictive Capacity of Pre-Donation GFR and Renal Reserve Capacity for Donor Renal Function After Living Kidney DonationM. Rook, H. S. Hofker, W. J. van Son, J. J. Homan van der Heide, R. J. Ploeg, G. J. Navis
Laparoscopic-Assisted Right Lobe Donor HepatectomyA.J. Koffron, R. Kung, T. Baker, J. Fryer, L. Clark, M. Abecassis
Cold Ischemia Time and Allograft Outcomes in Live Donor Renal Transplantation: Is Live Donor Organ Transport Feasible?C. E. Simpkins, R. A. Montgomery, A. M. Hawxby, J. E. Locke, S. E. Gentry, D. S. Warren, D. L. Segev
Evaluating Living Kidney Donors: Relationship Types, Psychosocial Criteria, and Consent Processes at US Transplant ProgramsJ. R. Rodrigue, M. Pavlakis, G. M. Danovitch, S. R. Johnson, S. J. Karp, K. Khwaja, D. W. Hanto, D. A. Mandelbrot
The Medical Evaluation of Living Kidney Donors: A Survey of US Transplant CentersD. A. Mandelbrot, M. Pavlakis, G. M. Danovitch, S. R. Johnson, S. J. Karp, K. Khwaja, D. W. Hanto, J. R. Rodrigue
Rescue of a Living Donor with Liver TransplantationB. Ringe, G. Xiao, D. A. Sass, J. Karam, S. Shang, T. P. Maroney, A. E. Trebelev, S. Levison, A. C. Fuchs, R. Petrucci, A. Ko, M. Gonzalez, J. C. Reynolds, W. C. Meyers
Nephrectomy Elicits Impact of Age and BMI on Renal Hemodynamics: Lower Postdonation Reserve Capacity in Older or Overweight Kidney DonorsM. Rook, R. J. Bosma, W. J. van Son, H. S. Hofker, J. J. Homan van der Heide, P. M. ter Wee, R. J. Ploeg, G. J. Navis
Pregnancy and Birth After Kidney Donation: The Norwegian ExperienceA. V. Reisæter, J. Røislien, T. Henriksen, L. M. Irgens, A. Hartmann
Pregnancy Outcomes After Kidney DonationH. N. Ibrahim, S. K. Akkina, E. Leister, K. Gillingham, G. Cordner, H. Guo, R. Bailey, T. Rogers, A. J. Matas
Education:
Preferences, Knowledge, Communication and Patient-Physician Discussion of Living Kidney Transplantation in African American FamiliesL. E. Boulware, L. A. Meoni, N. E. Fink, R. S. Parekh, W. H. L. Kao, M. J. Klag, N. R. Powe
Organ Donation Decision: Comparison of Donor and Nondonor FamiliesJ. R. Rodrigue, D. L. Cornell, R. J. Howard
Increasing Live Donor Kidney Transplantation: A Randomized Controlled Trial of a Home-Based Educational InterventionJ. R. Rodrigue, D. L. Cornell, J. K. Lin, B. Kaplan, R. J. Howard
Emigration from the British Isles to Southeastern Spain: A Study of Attitudes Toward Organ DonationA. Ríos, P. Cascales, L. Martínez, J. Sánchez, N. Jarvis, P. Parrilla, P. Ramírez
Virtual Issue compiled online 2 Feb 2010

Determining death for deceased organ donation

Darshak Sanghavi, writing a while ago in the NY Times Sunday Magazine, discusses When Does Death Start?

"Organ transplantation must abide by the so-called dead-donor rule: a person has to be declared dead before any vital organs can be removed. Yet organs have to be alive if there is any hope of successful transfer to a recipient. Medical professionals have handled this paradoxical situation — finding a dead body with live organs — by fashioning a category of people with beating hearts who are said to be brain-dead, usually after a traumatic head injury, and who are considered just as dead as if they had rigor mortis.
To diagnose brain death, doctors typically go through a checklist of about a dozen items, including assessing reflexes like blinking, coughing and breathing, which are all controlled by the brainstem. The criteria are extremely strict, and only a tiny fraction of severely brain-injured people meet them."

Before brain death, the traditional definition of death involved irreversible cessation of heart beat, and you can also donate after cardiac death (DCD), but things have to move fast, since once circulation stops the organs begin to die. "D.C.D. requires doctors to confront the shadowy question of exactly when somebody dies after the heart stops."

In the U.S., we seem to be converging on a 5-minute rule.

Books about markets for body parts (for and against)

Below are a mix of books, some scholarly some popular, mostly harvested by clicking on the Amazon links "people who bought this book also bought," from one book to the next. The descriptions are from Amazon:

Body Shopping: Converting Body Parts to Profit by Donna Dickenson
Product Description
According to law, you don't actually own your own body, and you might be shocked by the cunning ways everyone from researchers and entrepreneurs to doctors, insurers, and governments are using that fact to their advantage. Thanks to developments in biotechnology and medicine, cells, tissues, and organs are now viewed as both a valuable source of information and as the raw material for new commercial products.This 'currency of the future' might be fueling the new biotechnology industry, but the former owners of that flesh and bone aren't entitled to one fraction of the proceeds. In "Body Shopping", award-winning writer Donna Dickenson makes a case against the newfound rights of businesses to harvest body parts and gain exclusive profit from the resulting products and processes. To illustrate her case, she presents a series of compelling stories of individuals injured or abused by the increasingly rapacious biotechnology industry. Some cases have become public scandals, such as the illicit selling of the late broadcaster Alastair Cooke's bones by a body parts ring involving surgeons and undertakers.Others are hardly known at all, including the way in which for-profit umbilical cord blood banks target pregnant women with offers of a 'service' that professional obstetrics bodies view as dangerous, the leukemia patient who tried and failed to claim property rights in a $3 billion cell line created from his tissue, and the real risks facing women who provide eggs for the global market in baby-making. "Body Shopping" offers a fresh, international, and completely up-to-date take on the evolving legal position, the historical long view, and the latest biomedical research - an approach that goes beyond a mere recital of horror stories to suggest a range of new strategies to bring the biotechnology industry to heel. The result is a gripping, powerful book that is essential reading for everyone from parents to philosophers, and from scientists to lawmakers - everyone who believes that no human should ever be reduced to the sum of their body parts.


Black Markets: The Supply and Demand of Body Parts by Michele Goodwin, 2006
From Publishers Weekly
Law professor and bioethicist Goodwin sheds much needed light in this disturbing examination of yet another failure of the American health care system: an organ donation process that leads to the sale of human organs. Despite some highly technical sections, the author artfully uses case law and tragic stories of people caught in the machinery of an organ marketplace that favors the well connected. Even readers well versed in current events are likely to be shocked by the prevalence of "presumed consent" legislation in 28 states that shifts the choice to donate away from potential donors —corneas, for instance, are routinely harvested by local coroners unless a specific prior refusal has been communicated (and sometimes even despite such a directive). The author does a good job of linking this country's history of medical scandals that victimized African-Americans to that community's misgivings about serving as either donors or seekers of a spot on the coveted transplant waiting lists. Her controversial recommendations, which include lifting the taboo on selling cadaveric organs to address the organ deficit, should spark much discussion. (Mar.)


Tissue Economies: Blood, Organs, and Cell Lines in Late Capitalism (Science and Cultural Theory) ~ Catherine Waldby (Author), Robert Mitchell (Author)
Product Description
As new medical technologies are developed, more and more human tissues—such as skin, bones, heart valves, embryos, and stem cell lines—are stored and distributed for therapeutic and research purposes. The accelerating circulation of human tissue fragments raises profound social and ethical concerns related to who donates or sells bodily tissue, who receives it, and who profits—or does not—from the transaction. Catherine Waldby and Robert Mitchell survey the rapidly expanding economies of exchange in human tissue, explaining the complex questions raised and suggesting likely developments. Comparing contemporary tissue economies in the United Kingdom and United States, they explore and complicate the distinction that has dominated practice and policy for several decades: the distinction between tissue as a gift to be exchanged in a transaction separate from the commercial market and tissue as a commodity to be traded for profit.
Waldby and Mitchell pull together a prodigious amount of research—involving policy reports and scientific papers, operating manuals, legal decisions, interviews, journalism, and Congressional testimony—to offer a series of case studies based on particular forms of tissue exchange. They examine the effect of threats of contamination—from HIV and other pathogens—on blood banks’ understandings of the gift/commodity relationship; the growth of autologous economies, in which individuals bank their tissues for their own use; the creation of the United Kingdom’s Stem Cell bank, which facilitates the donation of embryos for stem cell development; and the legal and financial repercussions of designating some tissues “hospital waste.” They also consider the impact of different models of biotechnology patents on tissue economies and the relationship between experimental therapies to regenerate damaged or degenerated tissues and calls for a legal, for-profit market in organs. Ultimately, Waldby and Mitchell conclude that scientific technologies, the globalization of tissue exchange, and recent anthropological, sociological, and legal thinking have blurred any strict line separating donations from the incursion of market values into tissue economies.


Body Brokers: Inside America's Underground Trade in Human Remains (Paperback)~ Annie Cheney 2006
From Booklist
*Starred Review* Here's one with the potential to keep folks up nights, wondering whether the urn on the mantel contains 100-percent Uncle Fred or a blend. Before journalist Cheney began an assignment for My Generation magazine, she had never suspected there might be diverse career opportunities for cadavers, that whatever one wants to be when one grows up, options continue to exist postmortem. But consider the ever-popular organ donor program. And then there's the option of donating one's body to a medical school for the betterment of mankind through science. Once that latter choice is made, Cheney learned, alternatives multiply, and a corpse can follow one of several roads. On a lower thoroughfare, big bucks are waiting for the cold-blooded entrepreneur ready to carve human bodies up like chickens and parcel them out to the highest bidder for such uses as military bomb test dummies, lifelike operative subjects for medical seminars, and resource troves for the machine-tooling of bones into orthopedic apparatus. Even if one never willingly donates one's body, there are enough unscrupulous morticians and morgue workers who will surreptitiously carve out an ulna or a femur and replace it with a PVC pipe, then sell the goods on the not-so-open open market. This is a chilling expose of the grisly industry of body trading. Donna ChavezCopyright © American Library Association. All rights reserved --This text refers to the Hardcover edition.


Kidney for Sale by Owner: Human Organs, Transplantation, and the Market )~ Mark J Cherry, 2005
Product Description
Over the past decade in the United States, nearly 6,000 people a year have died waiting for organ transplants. In 2003 alone, only 20,000 out of the 83,000 waiting for transplants received them - in anyone's eyes, a tragedy. Many of these deaths could have been prevented, and many more lives saved, were it not for the almost universal moral hand wringing over the concept of selling human organs. Bioethicist Mark Cherry explores the why of these well-intentioned misperceptions and legislation and boldly deconstructs the roadblocks that are standing in the way of restoring health to thousands of people. If most Americans accept the notion that the market is the most efficient means to distribute resources, why should body parts be excluded? Kidney for Sale by Owner contends that the market is indeed a legitimate - and humane - way to procure and distribute human organs. Cherry stakes the claim that it may be even more just, and more compatible with many Western religious and philosophical traditions, than the current charity-based system now in place. He carefully examines arguments against a market for body parts, including assertions based on the moral views of John Locke, Immanuel Kant, and Thomas Aquinas, and shows these claims to be steeped in myth, oversimplification, and contorted logic. Rather than focusing on purported human exploitation and the irrational "moral repugnance" of selling organs, Cherry argues that we should focus on saving lives. Following on the thinking of the philosopher Robert Nozick, he demonstrates that, with regard to body parts, the important core humanitarian values of equality, liberty, altruism, social solidarity, human dignity, and, ultimately, improved health care are more successfully supported by a regulated market rather than by well meant but misguided, prohibitions.


The Ethics of Organ Transplants: The Current Debate (Contemporary Issues (Buffalo, N.Y.).) (Paperback 1999)~ Arthur L. Caplan (Author, Editor), Daniel H. Coelho (Editor)
From Library Journal
Renowned bioethicist Caplan (Ctr. for Bioethics, Univ. of Pennsylvania) and medical writer Coelho have selected 35 articles that are representative of the ethical issues surrounding organ transplantation. Scarcity of organs and the high costs involved in these procedures force difficult legal, philosophical, scientific, and economic choices. What are the sources of organs used in transplantation? How can we make the procurement system more efficient? Should we pay for organs? Should someone who has already received one transplant be allowed a second? Should alcoholics be given liver transplants? Are transplants really worth the tremendous costs? These are just a few of the questions discussed here. In many cases, the editors have selected companion articles that illustrate contrasting viewpoints on a particular issue. Although some articles are slightly dated, the issues are still relevant. This well-balanced, reasonably priced compilation is recommended for all libraries.ATina Neville, Univ. of South Florida at St. Petersburg Lib.Copyright 1999 Reed Business Information, Inc.


The U.S. Organ Procurement System: A Prescription for Reform (AEI Evaluative Studies.) (Hardcover) by David L. Kaserman and A. H. Barnett
Product Description
Experts make a compelling and persuasive case for markets in human organs.

Kieran Healy, Last Best Gift. Altruism and the Market for Human Blood and Organs. Chicago University Press, 2006


The Baby Business: How Money, Science, and Politics Drive the Commerce of Conception (Hardcover)~ Debora L. Spar
From Publishers Weekly
Among the troubling aspects of new reproductive technologies is the takeover of reproduction by the marketplace. This probing study accepts the free market process while casting a discerning and skeptical eye at its pitfalls. Harvard business prof Spar (The Cooperative Edge: The Internal Politics of International Cartels) explores many aspects of the high-tech commodification of procreation: the fabulous revenues commercial fertility clinics earn from couples' desperate desire for children and the ensuing conflicts between medical ethics and the profit motive; the premiums paid for sperm and eggs from genetically desirable donors; the possible exploitation of poor, nonwhite and Third World surrogate mothers paid to gestate the spawn of wealthy Westerners; the fine line between modern adoption practices and outright baby selling; and the new entrepreneurial paradigm of maternity, in which the official "mother" simply finances the assemblage of sperm, purchased egg and hired womb and lays contractual claim to the finished infant. Spar considers most of these developments inevitable and not undesirable (they provide kids to parents who want them), but calls for government regulation to curb excesses and protect the interests of all involved. Her sanguinity will not satisfy all critics, but she offers a lucid, nuanced guide to this brave new world. (Feb. 14) Copyright © Reed Business Information, a division of Reed Elsevier Inc. All rights reserved.

Why isn't the queue longer for deceased donor kidneys?

There are approximately 80,000 people signed up on the waiting list for deceased donor kidneys in the U.S., and this list has been getting longer. We only manage to do about 11,000 deceased donor transplants a year. (There are another approx. 6000 live donor transplants per year).

Kidney exchange and other innovations in transplantation are attempts to make the list shorter.
But a different kind of public health question is, why isn't the list longer? According to the latest Kidney and Urologic Diseases Statistics for the United States, there are presently just over half a million people suffering from End Stage Renal Disease, of whom just over 350,000 are undergoing dialysis. Why aren't all these folks on the deceased donor transplant list?

Some of them may not be in a position to benefit from a transplant, e.g. they may have other critical illnesses, or may not be healthy enough to undergo major surgery. But some of them may just not be getting adequate information about transplantation. Here's a story about that from the St. Louis Post Dispatch: Program touts kidney transplants over dialysis.

"Several years ago, Amy Waterman, assistant professor of medicine and a social psychologist at Washington University, realized that most people with kidney failure go on dialysis and stay on it until they die.

She studied more than 1,000 renal patients and living donors and found that they're often so overwhelmed with information about dialysis, including necessary lifestyle changes, that they're given little or no information on kidney transplants in the crucial months after being diagnosed"
..."But time is of the essence because patients spend an average of four years on transplant waiting lists, yet only about a third of all dialysis patients live more than five years after diagnosis, Waterman says. In comparison, 70 percent to 80 percent of those who get kidney transplants live more than five years."

On a related matter, Dorry Segev of Johns Hopkins is quoted in a press release about a forthcoming article in the AJT suggesting that too few elderly patients are put on the waiting list for extended criteria deceased donor kidneys: Seniors Stymied in Wait for Kidney Transplants

Today is (also) National Donor Day

Happy Valentine's Day! Isn't it good to love and be loved?

Food for thought: Today is also National Donor Day.

"February 14 is the 10th National Donor Day -- a day to give the gift of life.
Fill out an organ and tissue donation card, register with your State Donor Registry and make sure your family knows you want to be a donor.
Join the National Registry of potential volunteer marrow and blood stem cell donors.
Learn how you can donate your baby's umbilical cord blood stem cells at birth.
Donate blood.
Why be a Donor?
The need is great and growing.
Almost 95,000 people are in need of an organ for transplant.
Approximately 35,000 children and adults in our country have life-threatening blood diseases that could be treated by a marrow/blood stem cell or cord blood transplant.
Every two seconds someone in America needs blood, more than 39,000 units each day, according to the American Red Cross.
Why do it Today?
Valentine's Day is the day of love and donation is the gift of life. Can you think of a more loving gesture than making February 14 the day you join thousands of Americans in making the donation decision?

National Donor Day was started in 1998 by the Saturn Corporation and its United Auto Workers partners with the support of the U.S. Department of Health and Human Services and many nonprofit health organizations. "

Australia to Lift Ban on Xenotransplants

Australia to Lift Ban on Animal Transplants

"Australia will join some 14 other countries -- including Japan, New Zealand and the United States -- in allowing xenotransplantation, the transplanting of animal organs and cells into humans to substitute for human organ donors and to treat diseases like diabetes.
The Australian moratorium was introduced in 2004 based on concerns that research in the area could prompt animal viruses, particularly pig viruses, to jump the species gap into humans.
The World Health Organization has called on countries to establish regulatory control and surveillance mechanisms before allowing xenotransplantations."

HT: Steve Leider

Random allocation, preferences, and welfare: a fish story

Flying from Madrid to Boston on an Airbus with two aisles not long ago, two stewardesses proceeded in parallel down the aisles offering food. I asked for the fish, but the stewardess in my aisle was already out of fish. Speaking to her colleague in the other aisle, she ascertained that her colleague still had some fish. Rather than pass the fish across the (empty) seat between them, “my” stewardess told me that, if her colleague still had fish when she completed her aisle, then I could have it. (I chose the vegetable dish…)

We see similar issues when changes are discussed in how to allocate deceased-donor organs for transplants, or some other policy where there has been a previous decision on an order of allocation to randomly arriving agents. To have passed the fish across to me would have disadvantaged some passenger who, but for the demand for fish on my side of the plane, would have been able to eat fish…

Of course, assuming that on which side of the plane passengers are seated is random, the policy of allowing fish to be passed from side to side and not just from front to back would have the same ex-ante welfare properties. But, once the passengers are seated, any change in policy would likely help some passenger only by hurting another.

This kind of discussion comes up from time to time in the allocation of school places, as well as transplant organs.

Allocation of deceased donor livers

Ex-chief of transplant program indicted in cover-up of patient switch

"On Wednesday, a federal grand jury indicted the former director of the liver transplant program at St. Vincent Medical Center in Los Angeles, California, for allegedly lying about a liver accepted for one patient but transplanted instead into another patient who was lower on the waiting list."

A kidney exchange in Minnesota

Josephine Marcotty at the Minneapolis St. Paul Star Tribune continues to do a great job of reporting on kidney exchange. Here's her latest report: Doubling up on kidney donations.

"The two-way kidney swap between HCMC and the University of Maryland Medical Center this week was a dramatic example of the next best idea in transplant medicine: A highly choreographed computer exchange that matches living donors with people in kidney failure across the country. It promises to save millions of dollars in medical costs and end the ordeal facing many of the 80,000 kidney patients on the nation's transplant list, who face a wait of five years or more to get an organ from a deceased donor."

This exchange involved a highly sensitized patient:
"Very few people in the general population would have been a match for his patient, he said.
Only a large, computerized data base of potential donors could find her that "needle in a haystack," "
...
"These sophisticated national organ exchanges are still in their infancy, and Minnesota hospitals are only now beginning to participate. In November the Mayo Clinic did a four-way swap among three kidney patients at the Rochester clinic and one at its Arizona clinic. In the last two years, transplant centers in other states have done several hundred such paired exchanges. Late last year, the organization that manages the national transplant system for the federal government launched a pilot program that could eventually create a nationwide matching system.
Growing waiting list
With the rapid spread of kidney disease in the past two decades and an ever-longer waiting list for organs from deceased donors, "the wait times are becoming unpalatable," said Dr. Mark Odland, Johnson's transplant surgeon at HCMC. "You have to start looking for alternatives." "

Incentives for organ donors at MR and the WSJ

Alex Tabarrok writes at MR about Innovative Solutions to the Shortage of Transplant Organs, and at the WSJ: The Meat Market.

He discusses recent developments in transplantation policy in Israel and Singapore, among other things.

Israel revamps its priority system for deceased donor organs

In an effort to increase the number of deceased organ donors, Israel has revamped its allocation system to give priority to those who have themselves signed up to donate, and to their relatives and the relatives of previous donors.

New Law For Organ Donation In Israel: Increased Priority For Those Who Are Prepared To Donate

"An article published Online First and in The Lancet reports that a unique new law comes into effect in Israel in January 2010. It states that people who are prepared to sign donor cards themselves receive priority when they are in need of an organ transplant. In addition, increased priority is given to first degree relatives of those who have signed donor cards, to first degree relatives of those who have died and given organs, and to live donors of a kidney, liver lobe or lung lobe who have donated for as yet undesignated recipients. The article is the work of Professor Jacob Lavee, Director of the Heart Transplantation Unit, Sheba Medical Centre, Ramat Gan, and the Israel Transplant Centre, and colleagues. "
...
"There are different levels of priority concerning the different situations. A transplant candidate with a first-degree relative who has signed a donor card would be given half the allocation priority that is given to a transplant candidate who has signed his or her own donor card. Then again, a transplant candidate with a first-degree relative who donated organs after death or who was an eligible live non-directed organ donor would be given allocation priority 1.5 times greater than that given to candidates who have signed their own donor cards. Among candidates with the same number of allocation points, organs will be allocated first to prioritisation-eligible candidates. Regardless of the new law, patients in urgent need of a heart, lung, or liver transplant due to their serious condition will continue to receive priority. However, in the event that two such people are eligible for the same organ, their priority status under the new law would decide who receives the organ. Candidates under 18 and those unable to express their wishes due to physical or mental disability will retain their priority status versus an adult who merits priority."

This priority system is more nuanced than the one enshrined in Singapore law (see the bottom of this post). And of course legislation on a national scale gives donors a priority for all deceased donor organs, not just those from like-minded donors, which is the path being taken by Lifesharers, an interesting organization about which I posted here.

HT: Steve Leider

Update: here's a YNet followup from March 2010 Radical way to boost organ donation.It discusses, among other things, political obstacles to implementing the new law...