Organ Donation Law: Much More Than You Wanted to Know
Ireland’s missed opportunity
Dáil Éireann (the main house of the Irish parliament) has recently finished considering a major change to the law on organ donation. The government’s Human Tissue Bill is the first attempt to systematise the legal approach to organ transplantation in Ireland, and it received cross-party support.
Irish law is behind the curve when it comes to organ donation, with a substantially underdeveloped legal infrastructure for transplantation. The government’s response is, essentially, to copy existing legislation in other Western countries. This is supposed to be a selling point: as Health Minister Stephen Donnelly put it, “the Bill will bring the State in line with international best practice”.
Much of what the rest of the world does is just common sense; but the proposed approach is also a significant missed opportunity. “Best practice” from other Western nations has failed, creating a major international shortage of organs, particularly kidneys. Ireland’s archaic transplantation laws could have been an occasion for the government to design a new approach, focussing on the best tool we have for increasing kidney transplants: living donation. A bolder and more courageous attempt would end the organ shortage.
The organ shortage is mostly a kidney shortage
Dozens of Irish people die each year while waiting for an organ. Across Europe, the annual shortage (the difference between the number of people added to waiting lists and the number of people who get a transplant) amounts to nearly 10,000 organs.1 Policymakers are aware that there are too few donor organs and too few people receiving transplants. But not all organs are equally represented.
The latest figures (from 2021) showed that there were 4 patients in Ireland on the waiting list for a heart transplant, 23 people waiting for a pancreas, 30 for a lung transplant, and 32 for a liver. By contrast, 512 people were on the waiting list for a kidney – substantially more than every other organ put together.2 Indeed, across the whole OECD, kidney disease is by far the most common cause of organ failure, with over a million patients – yet only 40% will receive a kidney transplant.3 The international organ shortage is mostly – though not entirely – a kidney shortage.
Partly, this is just a matter of how common kidney disease is: about one in twenty people in Ireland have chronic kidney disease,4 and while most of these cases will not progress to kidney failure, over 400 a year do.5 Another factor is better technology for kidney disease. Transplantation is a logistically complicated enterprise, requiring two different operations; it can demand long waiting times just to organise. Kidney patients can plausibly wait on dialysis, but there’s no comparable technology to allow patients with liver or heart failure to just wait until a donor organ turns up.6
Some people learn about the role of dialysis and feel that the shortage is less pressing. Few of these people have ever met someone on dialysis. It’s a gruelling experience, associated with serious pain and around-the-clock fatigue, that takes three to four hours at a time and must be performed multiple times a week. And even after all of that, dialysis has worse survival rates than many cancers.7 In a world without a kidney shortage, dialysis would merely be a technology that facilitates the logistics of transplantation; the fact that so many people have to rely on it for years at a time is a policy failure.
Opportunities for expanding deceased donation are limited
The trademark policy for expanding organ supply in the Human Tissue Bill is the so-called ‘opt-out’ system. Rather than having to explicitly declare your consent for organ donation during your life, your consent will be assumed unless you make an explicit declaration to the contrary.
The evidence supporting opt-out laws is, unfortunately, far from clear.8 Dr Alan Gaffney, one of the country’s most senior transplantation leads, last year said: “There is no evidence that opt-out legislation has ever led to sustained increase in organ donation rates”. This is counterintuitive, as a lot of people assume that an opt-out system would have a huge effect. The worry is that under most opt-out approaches (including the Human Tissue Bill) organ donation would still be subject to a family veto. Family vetoes are common even where the deceased explicitly opted in, and it only makes sense that this would be more common in cases where the deceased merely failed to opt out. The increased donor consent rates can be partly or wholly offset by reduced family consent rates.
But even if opt-out were as effective as its most effusive advocates believe, we would still struggle to close the gap between supply and demand – just because of the science of death.
As soon as your heart stops beating, your cells stop receiving oxygen, and your tissues begin to die; very quickly, your organs become unusable. This is the primary medical challenge of organ donation. Most donors are drawn from the small pool of people who die while on a ventilator in hospital, because their hearts and lungs can be kept working artificially after death. Donors also have to have a relatively clean bill of health, which rules out most of the already small pool of people who die in the right conditions. Even in intensive care wards (which are best prepared for donation), fewer than 10% of those who die are potential donors. In other words: the vast majority of people will not become organ donors after they die, no matter what policies we choose.
Spain is widely hailed as the model country for organ transplantation after death. The country’s achievements are genuinely impressive: its donation rate is by far the highest in Europe, thanks to remarkable levels of investment and logistical competence in its extensive national network of transplant coordinators.9 Yet, although there are around 400,000 deaths in Spain in a given year, even with the best organ donation system in the world only around 4–5,000 transplants can be carried out annually.10 As a result, Spain too has an organ shortage, with authorities describing a “chronic inability to cope with the transplantation needs of patients”.11 The United States, which runs a close second to Spain in terms of donation rates, sees thousands of people die on the kidney waiting list each year.12
Even if Ireland – and, for that matter, the rest of the world – managed to catch up with Spanish donor numbers, we would not end the kidney shortage. For that, we need to rethink our approach to organ donation much more fundamentally than the Human Tissue Bill does.
Living donation has incredible potential…
Every human being needs their heart, their lungs, their pancreas, their small intestine. And we all need a kidney. But, crucially, the vast majority of us only need one.
It’s an open scientific question as to why nature gave us an extra kidney, but it’s pretty clear that you can get by just fine with only one. Patients who undergo a nephrectomy (kidney removal surgery) see an initial drop in kidney function, but this quickly returns to normal levels.13 And because most causes of kidney failure affect both kidneys at once, a second kidney doesn’t do much to protect you: the risks of kidney failure are low after nephrectomy.14 Studies have found no significant difference in risk of death afterwards.15 There is some evidence to suggest that people who are born with only one kidney are more likely to develop certain health problems,16 but the factors involved don’t apply to the removal of a kidney in adulthood.17 Indeed, kidney transplant recipients are normally just given one kidney: it’s all they need.
This incredible fact makes kidneys unlike any other organ: you can donate a kidney while you’re still alive.18 Indeed, living donation is a relatively routine procedure around the world, with people giving their kidneys especially to family members but also close friends. Obviously living kidney donation involves surgery under general anaesthetic, so comes with risks. But the data shows that (as one expert put it) living donation is “one of the safest operations one can undergo”, and for otherwise healthy people, the risks are very small – a 0.03% mortality risk during surgery, about a sixth of the risk from routine surgery for gallstones.19 And ‘living kidneys’ are even better for recipients, tending to last a longer time in their bodies (with fewer complications) than transplants from deceased donors.20
(It’s important to mention the only data that gives me pause: there is some evidence associating living kidney donation with a higher chance of pre-eclampsia during pregnancy. The risk is not huge, but it is significant, and this should be a consideration for potential donors who intend to become pregnant.)21
The main organisational problem with living donation is compatibility. Just like with blood, people have limitations on which kidneys their body can accept. And unfortunately, it often happens that patients don’t know any matches who are willing to donate. You can sometimes overcome this barrier with kidney “swaps”, whereby person A’s loved one donates to person B in exchange for person B’s loved one donating to person A. The problem is that these require the donor-recipient pairs to be exactly symmetrical.22
This is solved with a ‘kidney chain’, which works like this. A kidney transplant is given to person A, on the understanding that their incompatible loved one will make a living donation. That kidney is given to person B, on the understanding that their incompatible loved one will make a donation, which is given to person C, and so on. In this way, you don’t need pairs to be exactly symmetrical: you can just keep matching for as long as you want, or (realistically) until it becomes too logistically difficult to find another non-matching pair. And at that point, we aren’t left with nothing – we’ve got the last donor kidney, which gets transplanted into the first available person on the waiting list.
The catch is that the first kidney usually can’t come from a deceased donor. The window of time between removing a kidney and having to transplant it is almost always too narrow to set up a logistically complex interchange like this; you need someone alive, who can wait until the right moment to go under the knife. Someone who uses their kidney to start a chain is a ‘non-directed’ donor, meaning they are willing to donate a kidney to whoever needs one (as opposed to a ‘directed’ donor, who is giving to a specific loved one).
Non-directed living donation is the single most effective method we have of increasing kidney procurement – indeed, it is one of the most effective ways to save lives full stop. Consider: when a deceased donor gives a kidney, that saves the life of one person on the waiting list; when a non-directed donor gives a kidney, that also saves a life on the waiting list, plus all the lives along the way on the kidney chain.
This is almost magic: every extra non-directed kidney donation gives us more than one kidney. (It’s so impressive that one of the academics responsible for designing kidney chains got a Nobel Prize.) By properly utilising kidney chains, a relatively small number of non-directed donors could free up kidneys from many willing but biologically incompatible directed donors.23 Working together with other nations by sharing donated kidneys, like we already do with deceased donors’ organs, could expand the pool even further and make chains even more efficient. This combination of directed and non-directed living donation, in conjunction with the existing use of deceased donor organs, really could be enough to end the kidney shortage.
…but it isn’t being used enough
It just so happens that the organ we have massive demand for is the same one where nearly every healthy person has a spare. We should be thanking the good Lord, and seizing the opportunity that has presented itself to us.
And, credit where it’s due, the Irish government has taken at least the first step towards embracing living donation as a solution: they no longer want to ban it. Currently, donating a kidney to a stranger is illegal in Ireland, and directed donation is only allowed in close family contexts.24 The Human Tissue Bill will finally end the ban, and that is unambiguously good news.
Beyond that, the news is less good. No provision is made for a national kidney-sharing scheme to fully exploit the possibilities of chains and swaps; indeed, no provision is made for chains and swaps whatsoever. Worse than that, a drafting error exists that might completely ban kidney swaps and chains: the requirements on the purpose of donations might, thanks to some overly stringent language, rule out directed donors giving kidneys as part of a swap or chain for the benefit of their loved one. As far as I know, no one intended this to happen.
This was discovered, not by the Health Committee or by backbench TDs or by civil servants, but by… me! I spotted it while writing the first draft of this article. After I sent a bunch of frantic emails to TDs, changes were submitted at the final stage by opposition TDs, but the Health Minister rejected these last-minute amendments.
I have some hope that this will be fixed before problems begin to arise, and if it does, the Human Tissue Bill really would be more in line with “international best practice”. But the fact that this mistake was even made shows the ignorance about living donation from our policymakers. The same ignorance that led to this mistake in Ireland results in rock-bottom rates of living donation across the world.
In France, only 15% of kidney transplants come from living donors; in the UK, the rate of live donation is a bit better at 28%, but in Spain it’s only 10% – Spanish excellence is limited to deceased donors.25 And even these headline figures disguise the deep underutilisation of non-directed donation and chains. Of the 923 live kidneys donated in the UK last year, fewer than 10% were from non-directed donors, and only 36 transplants were enabled by the use of chains.26 These countries are nowhere near bridging the gap between supply and demand in kidneys; without being willing to depart from the international status quo, Ireland can’t expect anything different.
Current approaches restrict living donation opportunities
It might be said that this is all we can expect. The average person thinks giving a kidney to a total stranger is an immense ask, an act of unparalleled altruism; they therefore assume that there will never be more than a vanishingly tiny number of non-directed donors, unless we start offering money for kidneys (which most people find repugnant).
But in fact, living donation is not a particularly arduous, awe-inspiring, or self-sacrificing act; as discussed above, it is safe and routine for the majority of healthy adults. Vanishingly few living kidney donors regret the decision afterwards,27 especially non-directed donors.28 And people give blood to strangers all the time! We have to ask: Why not kidneys?
When we look at how opportunities for living donation are presented, it is absolutely no surprise that donation rates are so low. All over the world, many healthcare professionals are essentially scared of living donation, directed and non-directed. There are often worries that directed donors are misinformed or unable to weigh risk, or (worse) being pressured or even bribed.29 When it comes to non-directed donation specifically, it is routinely assumed that – because it’s so unlikely someone would legitimately want to donate – anyone who expresses interest might be mentally ill and seeking to self-harm.30 This flies in the face of evidence showing non-directed donors are no more likely to have mental health issues than the average person, and almost never regret their decision.31 But when these attitudes are prevalent, we shouldn’t be surprised that the public see living donation as an act of extreme altruism, rather than a routine way to “give back”: this is what doctors tell them!32
Healthcare professionals almost never mention living donation, let alone promote it, except sometimes to very close family members of kidney failure patients. And people who take the initiative and express an interest face immense scrutiny of their health, motives, and mental state.33 To be sure, it’s important that donors are screened for conditions that might make their kidneys unsuitable or make one-kidney life dangerous. But many of the appointments donors have to attend are just discussions for the purpose of dissecting the donor’s motivations and talking through every possible risk, no matter how miniscule.34 In the time it takes a single non-directed donor to go through the UK’s process, over 250 people on their kidney waiting list die – in a country often considered an exemplar in living donation.35
Even ignoring the potential ban on chains and swaps, the trademark policy in the Human Tissue Bill for living donation is that every non-directed donor must be individually screened and approved by an independent panel. This panel will include an ethicist, a practising lawyer, a transplantation doctor, a psychiatrist, and two “patient advocates”, and is designed to provide “additional safeguards to protect the potential donor”.
It’s not clear why potential non-directed donors need additional safeguards, or what they have to be protected from. The Human Tissue Bill will institutionally embed the belief that non-directed donation is a rare and exceptional sacrifice, the kind of thing that would only be pursued by extreme altruists. And so, predictably, non-directed donation will continue to be rare and exceptional. There is no chance of a system like this procuring enough kidneys.
It does not have to be like this.
People are willing to donate – we shouldn’t be scared of it
In the UK, the current law on non-directed donation came into force in 2006, after pressure from a small group of campaigners – most of whom wanted to donate themselves.36 Transplant experts assumed that the practice would be over almost as soon as it began: donations would come from “half a dozen very enthusiastic individuals who’d been pushing the case, and then it would die a death.”37 But the opposite happened: the numbers kept growing. Now, dozens of people annually jump through all the hoops and prove, beyond a shadow of a doubt, that they genuinely want to be non-directed donors.
If you read profiles of these donors or listen to them speak in interviews, what strikes you is how immensely normal they all are: they’re not giving away half their salary, working full-time for non-profits, or living off locusts and wild honey.38 There are only two obvious ways in which they differ from the man or woman on the street. First, they are (on average) older and and more likely to be retired.39 And second: they all, for one reason or another, happened to come upon information about the safety and benefits of living donation.40 Some people hear about non-directed donation through religious or cultural groups that encourage it, like the effective altruists (one of whom, Scott Alexander, wrote a brilliant piece about his donation experience, including all the inane and meaningless hoops he had to jump through).41 But most donors are unconnected to any such groups; they just chance upon the info themselves.
The lesson to take from this story is: even with the disincentives and the hurdles and the bureaucracy, people want to do this. They want to do it for the same reason people give blood or donate to charity: they can save a life with little cost or risk to themselves. Not everyone would be willing to become a living kidney donor – but enough people could be. Living donation rates are not so incredibly low because of innate human selfishness. People just don’t know about it, don’t think about it, don’t understand how safe it is, or don’t see it as the kind of thing they could or should do.
We could change this. Doctors’ worries about living donation are substantially out-of-step with public opinion, which has no problem with people making the decision to donate.42 And studies have shown that, when people are approached about living donation and properly informed about the procedure, a significant number commit to it.43 Early steps taken in Belfast to merely speed up the process for living donors, without any more fundamental changes, have resulted in the living donation rate in Northern Ireland increasing by over 650%.44
Ireland’s unique legal position around organ donation was an opportunity. The government had the chance to use this Bill to design a new system: one that created regular opportunities for people to consider the decision to make a living donation, and that stripped away unnecessary hurdles.
In a speech on the Human Tissue Bill, the Health Minister said he wants to “make organ donation the norm in situations where the opportunity arises”. This language has been echoed by TDs across the Dáil, as well as campaigners and healthcare professionals – organ donation has become medically routine, and people (rightly!) want a legal and cultural framework that reflects this. But organ donation cannot simultaneously be routine and exceptional. Regardless of whether our framework for deceased donation is opt-out or opt-in, the only way to truly make organ donation the norm is to embrace living donation. We have to stop seeing non-directed donation as the exclusive preserve of the eccentric and the saintly, and massively expand the opportunities for Irish citizens to learn about and take part in living donation.
A personal epilogue
I’m an Irishman living in the UK, and this gives me an advantage over my fellow citizens: I already have the right to make a non-directed donation, through the NHS.
I first heard about non-directed donation several years ago, and spent a long time turning the idea over in my mind before I decided that it was right for me. I was living in Cambridge and so I reached out to the local hospital there to let them know that I was interested. Very quickly, they poured cold water on my idea: I was, the hospital told me, too young to donate. People in their early twenties may be old enough to drink, vote, and get married – indeed, I was doing all three (not necessarily at the same time). But according to the specialists in transplantation at the Cambridge University Hospitals Trust, we can’t be trusted to donate a kidney.
Part of their worry is that younger patients have a longer life ahead of them, which means more time to develop unlikely complications. But on the other hand, I was at the healthiest point of my life, which should have fed into the risk calculation. And more fundamentally, when we’re talking about increasing or decreasing risks on the order of one in a thousand, surely it was my calculation to make?
Now I live in Glasgow, and whether because Scotland takes a different approach than England overall or just because the Glaswegians are a more permissive people, they are not inherently opposed to accepting the kidney of a man in his twenties. And so earlier this year I sent another email, filled in some forms, had a preliminary appointment with the transplant coordinator, and was put on the first waiting list. It was not for a kidney function test to make sure my organs are ok for transplantation, or a cardiovascular test to confirm surgery would be safe, but a psychological evaluation. That will involve months of waiting, to see an expert whose time is scarce and should be given over to seeing people with real mental health needs.
The gold standard for medical ethics is the patient’s informed consent. But informed consent means that the medical system has to actually inform people. If the risks are low, acting as if they are high actively hinders people’s ability to give informed consent. Of course, doctors must not pretend the risks of kidney donation are lower than they are. But the UK, like the rest of the Western world, has decided to run to the other extreme: it acts as if the risks of donation are substantially higher than they are, and plays down the very real risks of death on the waiting list.
Irish politicians have begun to see how important it is that organ donation becomes the norm, but they have not yet figured out that this means donation must become normal. Hoping to increase the number of living donations is not an idealistic pipe dream relying on naïve assumptions about human goodness. It is a realistic proposal for solving a tragically real problem. But it requires a new approach, guided by the current moment. The State’s lack of legal infrastructure around transplants was a chance to design something new, a system that could allow Ireland to leapfrog other developed countries and become a model for the future of donation. By so closely following other European nations’ focus on deceased donation, the government has all but ensured that Ireland will just replicate other nations’ kidney shortages. That is a tragedy, plain and simple.
Peter McLaughlin works in the Scottish Parliament. You can follow him on Twitter here or read his personal blog here.
Organ Donation Transplant Ireland, 2021 Annual Report.
OECD, Cardiovascular Disease and Diabetes: Policies for Better Health and Quality of Care (Paris: OECD Publishing, 2015), doi: 10.1787/9789264233010-en, p. 42. The “over one million” figure was calculated by comparing the figure for kidney failure rate in this source with estimates of total OECD population.
Austin G. Stack et al., “Prevalence and variation of Chronic Kidney Disease in the Irish health system: initial findings from the National Kidney Disease Surveillance Programme”, BMC Nephrology 15 (2014), doi: 10.1186/1471-2369-15-185.
Well, not yet. The world’s first trial of “liver dialysis” took place earlier this year; if all goes well with this technology, perhaps in a few years we will have a liver shortage as desperately serious as our kidney shortage.
Kyla L. Naylor et al., “Mortality in Incident Maintenance Dialysis Patients Versus Incident Solid Organ Cancer Patients: A Population-Based Cohort”, American Journal of Kidney Disease 73 (2019), 765–776, doi: 10.1053/j.ajkd.2018.12.011.
Systematic studies have come down on both sides of the issue. For evidence supporting the effectiveness of opt-out legislation, see Susanna Madden et al., “The effect on consent rates for deceased organ donation in Wales after the introduction of an opt-out system”, Anaesthesia 75 (2020), 1146–1152, doi: 10.1111/anae.15055, or Alberto Abadie and Sebastien Gay, “The Impact of Presumed Consent Legislation on Cadaveric Organ Donation: A Cross Country Study”, Journal of Health Economics 25 (2006), 599–620, doi: 10.1016/j.jhealeco.2006.01.003. For sceptical perspectives, see Kieran Healy, “Do Presumed-Consent Laws Raise Organ Procurement Rates?”, DePaul Law Review 55 (2006), 1017–1043, and Amber Rithalia et al., “Impact of Presumed Consent for Organ Donation on Donation Rates: A Systematic Review”, British Medical Journal 338 (2009), 284–287, doi: 10.1136/bmj.a3162. My view is that the observational evidence supporting opt-out systems lacks any causal basis, and careful causal reasoning suggests that opt-out legislation has (at most) a very small effect.
Rafael Matesanz and Beatriz Doménguez-Gil et al., “How Spain Reached 40 Deceased Organ Donors per Million Population”, American Journal of Transplantation 17 (2017), 1447–1454, doi: 10.1111/ajt.14104.
Simon Streit et al., “Ten Lessons From the Spanish Model of Organ Donation and Transplantation”, Transplant International 36 (2023), doi: 10.3389/ti.2023.11009.
Matesanz and Doménguez-Gil et al., “How Spain Reached 40 Deceased Organ Donors per Million Population”, p. 1448.
Data from US Organ Procurement and Transplantation Network. Comparison between Spain and the US taken from Spanish Government data.
Ingela Fehrman-Ekholm et al., “Post-nephrectomy development of renal function in living kidney donors: a cross-sectional retrospective study”, Nephrology, Dialysis, Transplantation 26 (2011), 2377–2381, doi: 10.1093/ndt/gfr161.
Abimereki D. Muzaale et al., “Risk of end-stage renal disease following live kidney donation”, Journal of the American Medical Association 311 (2014), 579–586, doi: 10.1001/jama.2013.285141; Jun Young Park et al., “Long-term end-stage renal disease risks after living kidney donation: a systematic review and meta-analysis”, BMC Nephrology 24 (2023), doi: 10.1186/s12882-023-03208-z; Bryce A. Kiberd, “Estimating the long term impact of kidney donation on life expectancy and end stage renal disease”, Transplantation Research 2 (2013), doi: 10.1186/2047-1440-2-2.
Dorry L. Segev et al., “Perioperative mortality and long-term survival following live kidney donation”, Journal of the American Medical Association 303 (2010), 959–966, doi: 10.1001/jama.2010.237. Even a study that began by assuming donors face higher mortality rates ended up calculating the reduction in life expectancy to be only six months to a year: Bryce A. Kiberd and Karthik K. Tennankore, “Lifetime risks of kidney donation: a medical decision analysis”, BMJ Open 7 (2017), doi: 10.1136/bmjopen-2017-016490. The most famous dissenting voices on this matter, insisting on the risks from donation, are Geir Mjøen et al., “Long-term risks for kidney donors”, Kidney International 86 (2014), 162–167, doi: 10.1038/ki.2013.460. But their study involved comparing older donors with younger non-donors, which (to put it mildly) rather throws off the calculations! See Bruce Kaplan and Amna Ilahe, “Quantifying Risk of Kidney Donation: The Truth Is Not Out There (Yet)”, American Journal of Transplantation 14 (2014), 1715–1716, doi: 10.1111/ajt.12804.
Michiel F. Schreuder, “Life with one kidney”, Pediatric Nephrology 33 (2018), 595–604, doi: 10.1007/s00467-017-3686-4.
Bert L. Kasiske et al., “Long-term effects of reduced renal mass in humans”, Kidney International 48 (1995), 814–819.
It is also possible to make a living donation of a part (or ‘lobe’) of your liver. But this is much more dangerous for the donor, and has far fewer benefits for the recipient: indeed, in many cases donated lobes can only go to child patients, as they’d be of no benefit to adults.
Baldo Lucchese, “Good news for live organ donors”, Nature Reviews Nephrology 6 (2010), 316, citing data from Segev et al., “Perioperative mortality and long-term survival following live kidney donation”.
Eghlim Nemati et al., “Does Kidney Transplantation With Deceased or Living Donor Affect Graft Survival?”, Nephro-urology Monthly 6 (2014), doi: 10.5812/numonthly.12182.
Amit X. Garg et al., “Gestational hypertension and preeclampsia in living kidney donors”, New England Journal of Medicine 372 (2015), 124–133, doi: 10.1056/NEJMoa1408932.
It is possible to have “swaps” like this involving more than two donor-recipient pairs. These are much more efficient, but require at least six simultaneous surgeries to avoid the possibility of one of the donors “backing out” after their loved one receives a kidney. It’s not clear Ireland has the infrastructure to regularly run these. See Alvin E. Roth et al., “Efficient Kidney Exchange: Coincidence of Wants in Markets with Compatibility-Based Preferences”, American Economic Review 97 (2007), 828–851.
The ideal length of these chains (the number of incompatible pairs linked together) has been a matter of some debate. But the consensus tends to be trending towards the idea that they can be, and should be, rather long; the existence of ‘highly sensitised’ donors who require very specific matches gives us reason to think that there may be large number of willing-but-incompatible pairs that could be freed up to donate with long chains. See Itai Ashlagi et al., ‘The Need for (long) Chains in Kidney Exchange’, NBER Working Paper 18202 (2012), doi: 10.3386/w18202, and Itai Ashlagi et al., ‘Nonsimultaneous Chains and Dominos in Kidney-Paired Donation – Revisited’, American Journal of Transplantation 11 (2011), 984–994, doi: 10.1111/j.1600-6143.2011.03481.x.
To the best of my understanding, technically speaking non-directed donation might be in a bit more of a grey area than this. But this is a de facto ban, because no surgeon wants to be the one who tests the law.
Agence de la Biomédicine, 2022 Medical and Scientific Report [French only]; NHS Blood and Transplant, 2022/23 Donation and Transplantation Activity Report, p. 35; data from the Spanish Government.
NHS Blood and Transplant, 2022/23 Activity Report, p. 42
Courtenay M. Holscher et al., “Anxiety, depression, and regret of donation in living kidney donors”, BMC Nephrology 19 (2018), doi: 10.1186/s12882-018-1024-0; Ingela Fehrman-Ekholm et al., “Kidney Donors Don’t Regret: Follow-up of 370 Donors in Stockholm Since 1964”, Transplantation 69 (2000), 2067–2071. Even those very small number of live donors who later develop kidney failure don’t regret their donation (!): Colin M. E. Halverson et al., “Living Kidney Donors Who Develop Kidney Failure: Excerpts of Their Thoughts”, American Journal of Nephrology 43 (2016), 389–396, doi: 10.1159/000446161. See also Hannah Maple et al., “Psychosocial wellbeing after living kidney donation – a longitudinal, prospective study”, Transplant International 30 (2017), 987–1001, doi: 10.1111/tri.12974.
Jonas Wadstöm et al., “Living Anonymous Renal Donors Do Not Regret: Intermediate and Long-Term Follow-Up with a Focus on Motives and Psychosocial Outcomes”, Annals of Transplantation 24 (2019), 234–241, doi: 10.12659/aot.913827; Hannah Maple et al., “Motivations, Outcomes, and Characteristics of Unspecified (Nondirected Altruistic) Kidney Donors in the United Kingdom”, Transplantation 98 (2014), 1182–1189, doi: 10.1097/TP.0000000000000340.
Allison Tong et al., “Living Kidney Donor Assessment: Challenges, Uncertainties and Controversies Among Transplant Nephrologists and Surgeons”, American Journal of Transplantation 13 (2013), 2912–2923, doi: 10.1111/ajt.12411.
British Transplantation Society and Renal Association, Guidelines for Living Donor Kidney Transplantation (Fourth Edition), p. 224.
L. Ebony Boulwarea et al., “Attitudes, Psychology, and Risk Taking of Potential Live Kidney Donors: Strangers, Relatives, and the General Public”, American Journal of Transplantation 5 (2005), 1671–1680; Maple et al., “Motivations, Outcomes, and Characteristics of Unspecified Kidney Donors in the United Kingdom”. See also Allison Tong et al., “‘It was just an unconditional gift.’ Self reflections of non-directed living kidney donors”, Clinical Transplantation 26 (2012), 589–599, doi: 10.1111/j.1399-0012.2011.01578.x.
Hannah Maple et al., “Donating a Kidney to a Stranger: Are Healthcare Professionals Facilitating the Journey? Results From the BOUnD Study”, Transplant International 36 (2023), doi: 10.3389/ti.2023.11257.
Alexis Clarke, Annie Mitchell, and Charles Abraham, “Understanding donation experiences of unspecified (altruistic) kidney donors”, British Journal of Health Psychology 19 (2013), 393–408; Tong et al., “Living Kidney Donor Assessment”.
This claim is drawn from my personal experience in the UK; few studies of donor experience focus on the quantitative or “decision-theory” side of how the risks are presented. Please feel free to get in touch if you’d like to hear more about this.
Reports from non-directed donors in the UK are that the process typically takes between twelve and eighteen months (see e.g., here). 278 people died on the kidney waiting list in the UK in the twelve-month period we have the most recent data for. NHS Blood and Transplant, 2022/23 Activity Report, p. 36.
Many of these were so-called “Jesus Christians”, members of a tiny but anthropologically fascinating Protestant sect. Their immense enthusiasm for non-directed donation is portrayed (relatively sympathetically) in David Steinberg, “Kidneys and the Kindness of Strangers”, Health Affairs 22 (2003), 184–189 and (relatively unsympathetically) in the 2003 Channel 4 Documentary Kidneys For Jesus. It goes without saying, however, that the Jesus Christians are not the slightest bit representative of current non-directed donors in the UK or elsewhere.
Paul Gibbs, quoted in The Observer 13 July 2014.
Maple et al., “Motivations, Outcomes, and Characteristics of Unspecified Kidney Donors in the United Kingdom”.
Clarke, Mitchell, and Abraham, “Understanding donation experiences of unspecified kidney donors”, p. 398.
Scott notes one potential risk that I don’t mention, which might be worth addressing quickly: the radiation risk from the CT scan offered to most kidney donors. CT scans are (of course) routine, so this is perhaps a relatively niche worry, but Alexander argues that if we use the most common model of radiation sickness, called ‘linear no-threshold’, the small dose of radiation from a CT scan could be quite harmful to your health. In his footnotes and comments, Alexander defends using this model by saying that there is no evidence of a ‘threshold’ level of radiation (where any smaller doses are harmless). I agree with him on this, but this is only half of the assumption: the other part of the model is that risk increases ‘linearly’ with dose, a straight line graph rather than any sort of curve. More realistic models suggest that small doses of radiation, like you get in a CT scan, are much much safer than ‘linear no-threshold’ suggests, while larger doses are in fact much much more dangerous. See Jack Devanney, ‘LNT is nonsense’ and ‘Circling the LNT Wagons’. Anyway, in many countries if the donor is worried it is possible to avoid a CT scan altogether by using a different kind of scan; that was what Alexander’s doctors eventually did.
Aaron Spital and Max Spital, “Living Kidney Donation: Attitudes Outside the Transplant Center”, Archives of Internal Medicine 148 (1998), 1077–1080;
Monica A. Landolt et al., “They talk the talk: Surveying attitudes and judging behavior about living anonymous kidney donation”, Transplantation 76 (2003), 1437–1444.
Judi M. Graham and Aisling E. Courtney, “The Adoption of a One-Day Donor Assessment Model in a Living Kidney Donor Transplant Program: A Quality Improvement Project”, American Journal of Kidney Diseases 71 (2017), 209–215, doi: 10.1053/j.ajkd.2017.07.013.
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And I forgot to add, I especially liked the real talk on dialysis, which I know as a patient I learned a lot about the reality of, from talking to those who are doing that, than ever was apparent to the lay person; Generally it seems to always be presented as no big deal to live with it, but the way I like to think of it is 'life support', not the type where you are confined to a bed and die the minute the plug is pulled, but still, you need it, very regularly, or you will die and, as you say, the life you lead on it is not remotely like that of a health person for most.
Excellent piece Peter, really informative, and I say that as someone in need of a transplant and soon to go on the list here in France. Will be sharing that with interested folks.