Getting people to donate their organs
Too few people donate their organs, dead or alive. How can we make it easier?
Duncan McClements and Jason Hausenloy write about encouraging organ donations for Issue 14. Read it online here.
Too few people donate their organs, dead or alive. How can we make it easier to donate, but avoid the abuses that some fear from cash payments?
A hundred thousand people are waiting for an organ transplant in the US. Fifty-eight thousand are waiting for one in Europe. Many hundreds of thousands more people are waiting around the world. To say their experience waiting is unpleasant would be an understatement. Three-quarters of those on the waiting list are waiting for a kidney, and most of them are on dialysis – hooked up to a machine to filter waste products in blood for many hours a week with a myriad of side effects. This is painful, expensive, and risky. Thirty-seven percent of American dialysis patients who previously held a job lose or leave it. Perhaps half will die within five years if they don’t receive a new kidney. Over a third of dialysis patients suffer from depression. And this is the best technology humanity has to treat people waiting for a kidney transplant.
For most other organs, the story is even worse. Up to 12 percent of patients on the waiting list for a liver transplant die every year. Patients on the waiting list for a heart transplant often require an artificial heart to stay alive. Despite its name, this is a device that consists of a metal patchwork of pumps to assist the heart, not replace it. Close to 20 percent of patients given an artificial heart die in the first year, and those that survive have an elevated risk of infection, blood clots, and anemia.
Over 6,000 people on the organ transplant waiting list in the US die every year. Liver disease and kidney disease are the ninth and tenth leading causes of death in the US respectively. We don’t know how many people die globally. Some estimates place the mortality figures in the US from the kidney shortage alone at 43,000 each year, seven times higher than reported figures. This is because many patients who could benefit from an organ transplant don’t make it onto the waiting list at all. Other patients are removed from the waiting list because their condition has deteriorated so much that they would no longer benefit from receiving an organ.
The main medical challenge is not the transplant procedure but getting enough organs. Organs come from two sources: living donors and cadavers – that is, from donations made after the donor’s death. Living donors can only provide one kidney or a part of their liver. Cadavers can theoretically provide all their donatable organs upon death; however, this requires that the donor dies in a certain manner, such as a car crash, and is relatively young and healthy. Only 0.3 percent of cadavers, or approximately 10,000 per year, would be able to donate organs in the US today.
Despite only this third of a percent being eligible, more than twice as many organs come from cadaveric donations than live donors today. Hearts, lungs, pancreases, stomachs, and intestines can only be donated from cadavers. About two thirds of kidneys and over 90 percent of livers come from cadaveric donors.
For both live and cadaveric organ donation, we rely on donor altruism, often at a personal or financial cost to the donor themselves. We need a better way to increase the rate of organ donation. Why don’t we incentivize it?
Nudging our way to long waiting lists
Both live and cadaveric organ transplants have been refined over many decades. The first successful transplant was a single kidney between identical twins in 1954. Shortly afterward, doctors repeated the feat for the heart, liver, and pancreas. Today, these procedures are safe, cost-effective, and vital. Cumulative survival rates from rejection and infection for the first three years after a kidney transplant are above 96 percent. Only five percent of recipients ever return to dialysis. After 10 years, 34 percent of grafts have been rejected; however, since organ retransplantation has almost exactly the same success rate as primary transplantation, greater organ supply could still guarantee long-term health.
Organ transplants are much cheaper than the alternative. In Canada, dialysis costs $60,000 per patient per year, compared to $23,000 for kidney transplantation plus $6,000 a year for lifelong medication. This is a $31,000 saving in the first year and $54,000 all years thereafter: roughly $380,000 in total per patient.1 Patients who have had a successful transplant no longer suffer from the debilitating discomfort and disruption caused by their condition and treatment. Simply put, they can go on to live normal lives.
The issue, then, is not with the current medical procedures but the failure of existing policies to secure enough donors, live or cadaveric.
In almost all countries, living donors are uncompensated volunteers. And live donation is a gruelling process. Donors choose to undergo a surgical procedure and spend several days out of work and in hospital recovering. While most countries do cover medical expenses (narrowly defined), patients still regularly have to bear additional costs such as lodging, travel, and lost wages. In the US, the median kidney donor ends up forking out to the tune of $1,250 directly for the process, and over a quarter of them spend more than $5,500.
The procedure is not risk free: 2.2 percent of kidney donors will need to be readmitted to hospital for complications relating to their surgery. Another 0.5 percent (one in 200) will need a second operation. The literature on how dangerous kidney donation is to live donors is inconclusive. It’s difficult to control for factors like shared genetic conditions that make it more likely for a donor to have a family member in need of a transplant, and the research often does not include long-term follow-ups, so harms that arise later in life after donation might be missed. However, estimates of donation taking more than half a year off a donor’s expected life span are not uncommon. Liver donors face a higher mortality risk immediately after surgery than kidney donors – as many as one in 200 may die during the transplant surgery.
Some countries have experimented with how to encourage more cadaveric donations. Originally, opt-in systems were the norm. Donors were presumed to not have consented to donate their organs upon death, and if they wished to donate, they would need to actively seek out a government form or website to sign up, and have their families give consent after their deaths as well. Nowhere saw many donations from this system: even in the US, which has the world’s second highest cadaveric donation rate and the highest of any with an opt-in system, the absolute number of cadaveric donors is still low at around 0.004 percent of the population each year, or 14,903 individual deceased donors.
Other countries, like Belgium and France, have adopted opt-out (or ‘presumed consent’) systems, where individual consent is presumed unless people explicitly indicate otherwise, though their families’ consent is normally still required. Behavioral economics, as popularized in Richard Thaler and Cass Sunstein’s Nudge, suggests that default options can affect sign-ups for other policies and has led to significant enthusiasm for opt-out schemes.
Unfortunately, the opt-out system does not seem to have worked. A 2019 analysis of opt-in versus opt-out systems in OECD countries concluded that opt-out systems do not increase the supply of organs available from cadaveric donors in practice. This is because, in opt-out systems, families recognize that their loved ones have never given an explicit preference in favor of donation, and are therefore less willing to approve donation than in an opt-in system, where their deceased relative’s preferences have been made explicit. Perhaps removing familial consent could get around this, but doing so has proven very hard in practice where tried.
Not only have opt-out policies failed to increase cadaveric donation rates (the 2019 analysis finds a non-statistically significant increase from 15 per million to 20 per million), the same study finds that compared to opt-in countries, opt-out countries also had significantly fewer living donors – 4.8 versus 15.7 per million population. The 2019 study’s authors do not suggest a reason for this ‘significant drop in living donor rates’. However, it could be because the highly publicized introduction of an opt-out system may have convinced potential living donors that the shortage was less dire, and therefore their donation was less valuable.
A few jurisdictions have experimented with an approach called ‘mandated choice’, where individuals have to actively make a decision whether they consent to cadaveric organ donation or not. In theory, this combines the best of both systems. It forces everyone to make the choice actively to opt in or opt out, which means families have information about the true preference of their loved one.
Unfortunately, these schemes have often failed on implementation. Texas introduced a mandated choice scheme in 1991, where Texans had to indicate preference before registering for a driver’s license. Despite the US population generally supporting organ donation (in 2019, 90.4 percent of the US population said they did), over 80 percent of Texas drivers withheld their consent – meaning under a fifth gave approval for donating their organs. That is, rates were much lower than produced by the status quo: around 68.9 percent give consent in US hospitals today.
Whether it’s an opt-in or opt-out system, or nudges hard or soft, there are still far too few donations to satisfy demand. Another approach is needed.
Learning from plasma
There is another essential medical resource for which almost all countries face a shortage of domestic donors: blood plasma. Plasma is the liquid portion of the blood, rich in water, salts, and proteins. It’s the largest component of human blood. Donated blood plasma is used to treat trauma, burns, and clotting disorders, and provides important antibodies for patients with immune problems.
Whole-blood donation, the regular sort, is typically collected on a voluntary basis without compensation in around 10–20 minutes – and a large majority of blood products face no shortage in normal circumstances. The collection of blood plasma, which involves the live sorting of the blood into parts, takes longer, lasting around an hour (sometimes closer to two), and is much less comfortable. Because of this, donors are more reluctant to volunteer. In Canada, domestic plasma donation accounts for less than 16 percent of annual supply. However, at least in the developed world, plasma supplies are plentiful enough that very few people die from a lack of it – because we import it from the countries that pay for donations.
In the US, commercial plasma donation centers pay blood plasma donors for the inconvenience of donating it – rates range from $50 to $75 per session. Donors can donate up to twice a week. This system has been wildly successful. Today, the US is a large net exporter of blood plasma, accounting for nearly 70 percent of global supply – and another 20 percent comes from Germany, Austria, Hungary, and Czechia, which also compensate their donors. In fact, blood, including plasma, plus immunological products, together make up about 0.6 percent of total US exports by value, making them one of America's top twenty exports.2
Typically, when the costs of recruiting and retaining are factored in, such as sending out letters to contact donors, compensating donors is actually much cheaper than relying on altruism. For example, Australia’s National Blood Authority forecasted savings of AU$200 million a year if it adopted an incentive-based system to replace the current opt-in one.
Some people have worried that paying for plasma donations may solve one problem, but create another. Currently, whole blood is provided in sufficient quantities for almost all current needs in developed countries, despite donations being completely uncompensated. If people are paid to donate blood plasma, they may no longer be willing to donate whole blood for free.
Others worry that paying might result in lower-quality blood plasma, as donors previously motivated by their desire to help others may be replaced by those motivated purely by financial incentives who potentially have less healthy blood.
Data from Czechia and Canada suggests that neither of these are substantial concerns. Compensation was first introduced in Czechia in 2007; by 2010 the quantity of blood plasma donated had gone up fivefold without a substantial change in whole-blood donations. And Canada’s blood donation agency has found that plasma that comes from paid donations is ‘as safe as that from unpaid donations’.
There is still some way to go. Since most countries do not remunerate donors, don’t get many domestic unpaid donations, and rely on imports instead, the price of blood plasma is out of reach for many people, especially in poorer countries. The WHO reports that 1.4 million people globally have a primary immune deficiency, of which the majority can be treated with blood plasma therapy. But most of these people cannot access the blood plasma they need. If more countries were to allow remuneration, this shortage could be greatly reduced.
Still, even a few countries incentivizing the donation of plasma has done a huge amount of good. If incentives work for blood plasma, how about for organs?
Markets for organs
Some economists have suggested the creation of a ‘market for organs’. In this, either the government or commercial healthcare providers would purchase organs from donors at a price they mutually agree upon, increasing the number of organs available for those who need them.
Today, Iran is the closest to something like this. Iranians are allowed to sell their kidneys for any price they like. Iran has no kidney waiting list. Kidneys, though still expensive, are within reach for almost all of the Iranian population that needs one. The cost of a kidney is $4,200, which is less than two years of work on the Iranian minimum wage, and there are charities such as the Kidney Foundation that support those who need a kidney transplant but cannot afford it. Gary Becker, the Nobel Prize–winning economist, estimated in 2007 that if America adopted the Iranian system, the price of a kidney in the US would be around $21,000 (in 2024 dollars) – just over a third of the median wage of $58,000.
Such a system, even if we could overcome the obvious political difficulties, would not completely solve our organ shortages. Although kidneys and livers, which can be given by living donors, face the biggest shortage in most places, they are not the only organs we are short of.
As mentioned, most of our vital organs – our heart, lungs, pancreas, and so on – cannot be given by a living donor without that donor also dying. This means cadaveric donation is the only option. Since opt-ins and opt-outs don’t seem to make people significantly more likely to donate after their deaths, one possible way to get people to donate more of them would be allowing people to be paid in advance for donating their organs after they die. This would help raise the supply both of the organs that cannot be given by a living donor, and of the ones that can, but are given too rarely.
Politically, however, such a ‘pay in advance’ system is still probably not compatible with many people’s intuitions about what should and should not be for sale. Crafting it into a policy that can be accepted, while retaining most of its benefits, is the work of political economy and policy engineers.
The art of the possible
Though every country, bar Iran, suffers from severe organ shortages, many are successfully increasing donations without introducing a full-blown market.
Take Israel, one of the few countries whose system includes explicit incentives to donate. Because of its high Orthodox Jewish population who object to cadaveric organ donation on religious ground, Israel has even lower rates of these donations than most other developed countries. (However, prominent rabbis in the ultra-Orthodox community also promote live organ donation as an important religious virtue.)
In March 2008, to increase donations, the Israeli government implemented a ‘priority allocation’ policy to encourage more people to sign up to donate organs after their deaths. Once someone has been registered as a donor for three years, they receive priority allocation if they themselves need a transplant. If a donor dies and their organs are usable, their close family members also get higher priority for transplants if they need them – which also means that families are more inclined to give their consent for their deceased relatives’ organs to be used.
In its first year, the scheme led to 70,000 additional sign-ups. The momentum continued, with 11.1 percent of all potential organ donors being registered in the five years after the scheme was introduced, compared to 7.7 percent before. According to a 2017 study, when presented with the decision to authorize the donation of their dead relative’s organs, 55 percent of families decided to donate after the priority scheme, compared to 45 percent before.
For live donations, some countries offer greater incentives. In the Netherlands, live kidney donors are compensated much more generously than elsewhere. In addition to remuneration for a wider range of associated expenses, from transport to dog-walking during recovery, they are offered three months’ paid leave. As a result, the Netherlands has one of the highest live donor rates in the world. However, in 2022 1,327 people were still waiting for organs in the Netherlands, partially as a result of cadaveric donation rates a third to half lower than the UK or the US.
Other incentives schemes seem to work too. Existing compensation programs around the world cover one or more of travel, accommodation, lost income, meals, or childcare. One analysis of 109 countries, of which 23 had incentive schemes, found that those schemes raise live donation rates by 12–16 percent compared to no such schemes existing.
Some charities have started to provide these incentives privately. For example, Renewal, an Orthodox Jewish charity based in the US, spends approximately $18,900 on average per patient, compensating donors for loss of wages, for transportation, and for their recovery time.
Three new incentives for organ donation
Three incentives systems have been proven to work to both expand supply in Western countries while still retaining popular support. These systems have proven most successful at increasing live donations. But there are ways we could experiment with donations after death as well. For live donations we can offer generous compensation for the direct expenses incurred to donate – time, wages, and transport costs. And, we can bring extra live donor organs into use by giving donors and their families claims on other organs that the system has.
Getting more organs from cadavers will take experimentation. The most promising idea is giving those who have signed up to donate after death priority access to organs while they are still alive, if they need them.
Rolling all of these out more broadly is probably the best bet we have for making a difference in the short run. In the long run, the political difficulties with paying for organs, based on people’s deeply held convictions, may make animal donors, or synthetic organs our best bet.
First, more countries should introduce generous compensation for the costs associated with organ donation while avoiding direct payment, which people find discomfiting. Existing disincentives are large. Broadly defined – including medical costs, lost wages, and the discomfort associated with donation – the costs facing a living kidney donor add up to around $40,000. If these disincentives were reduced to zero, the same study estimates kidney donations would increase by 11,500 a year in the US, cutting the organ donation waiting list in half and leading to a net welfare gain of $13.7 billion and net savings for taxpayers of $1.3 billion, coming from a $1.1 million gross welfare gain per transplant via longer life expectancy and removing dialysis costs less the cost of transplantation and incentives, using data from smaller-scale schemes in New Zealand, the US, and Israel.
Even if direct cash payments are too unpopular, there are other ways of compensating people that may not be, including in-kind payments, such as gifts, paid holiday, recovery time, and tax breaks. One attempt to put this into practice that has received widespread scientific endorsement is Modify NOTA. The campaign advocates for offering $10,000 in tax credits to live donors every year for ten years after donation. As preventing a full course of dialysis is presently worth more than $320,000, this scheme would save money, on net, if it generated more than a 25 percent increase in living donations.3 (Or, to put it another way, if it generated one extra donor for every 31 existing donors, or more.)
Might such incentives crowd out altruistic behavior, reducing the rate of organ donation? In theory if organ donation becomes entirely viewed as a commercial good rather than a civic duty or gift, we could risk eroding an implicit ‘payment’ that incentivizes people to donate at the moment.
The success of payments for blood plasma is one reason to worry less about this risk. But there are other reasons to be sanguine. Some incentives, like covering lost wages and associated accommodation, are simply removing disincentives to altruism, rather than commoditizing organs, and can obviously be framed in a noncommercial way.
Survey data supports this interpretation. A study in the US state of Pennsylvania found that 70 percent of individuals claim their willingness to donate would be unaffected by incentives and 29 percent said it would increase. Another study found that 59 percent would be more likely to donate under a financial payment, 32 percent were unmoved, and nine percent were negatively influenced. While this is only survey data, it fits with the evidence from similar situations. The cases of Israel, the Netherlands, and Iran, plus the experience with blood plasma, demonstrate that incentives are most likely to increase the supply of organs available.
Paradoxically, incentives might not even decrease total altruism, a disproportionate benefit provided for others. There are many people who want to donate, and donate altruistically, but require some incentive to serve as the activation energy to do so. This is why charities pay most of their employees, even though they might pay them less than the full market rate for their work, as part of their time is effectively being donated – rather than relying on their working completely for free. And this effect is why studies of tax deductions for charitable giving generally find that not only are donations responsive to the effective tax rate their donor faces, but that for every dollar less the taxman takes, charitable giving increases more than a dollar.
Public opinion polls show support for monetary and nonmonetary compensation, especially among the younger population. A study in the American Journal of Transplantation found that 74 percent were in favor of financial incentives generally, of which 61 percent preferred direct payment the most, followed by paid leave (21 percent). Those under the age of 30 were 4.8 times less likely to claim that there would be no effect on their donation probability than those over the age of 54. The same Pennsylvania survey as discussed earlier (on willingness to donate) tested specific incentives, finding that the majority support many different incentives for organ donation: funeral benefits (81 percent), charitable contributions (73 percent), travel/lodging expenses (78 percent), and medical expenses (84 percent). On the other hand, direct payment remains more politically risky, with a mere 53 percent support – and practical experience suggests that opponents have much stronger views than those in favor.
The second step to increase donation rates is for donor matching programs to be created, and existing ones expanded. Famously, the economists Lloyd Shapley and Alvin Roth pioneered kidney exchange systems, for which they earned the Nobel Prize. Many individuals want to donate to their friends or family, but are incompatible with their blood type, which doubles the chance of rejection (the rate of rejection used to be much higher for non-compatible organs, but medical technology has steadily got better at suppressing immune responses so that the body will accept grafts).
Roth designed an exchange system, which allowed pairs of non-matching donors to be combined with other nonmatching pairs to ensure that everyone who wished to donate could find a suitable recipient. The willing donors of each recipient would switch places, which can extend beyond bilateral exchanges into as many as a chain of 35 transplants. These programs allow people who would be willing to donate to a friend to donate to a stranger, and in return get a kidney for their friend. Machine learning has recently been instrumental in allowing longer chains to be created – but they still make up only 12 percent of live organ donations in the US, despite even the single-largest blood group only comprising 35 percent of the population – so the probability of a friend altruistic enough to be willing to donate to another sharing a blood group is below 25 percent in the baseline case. There is likely considerable room for further expansion. Transfer systems are now widely understood as another tool to help facilitate the existing altruism of donors. (However, in Ireland at least, the law is moving to prohibit this kind of mechanism.)
The third step is for priority systems for kidney donors to be strengthened. Most countries offer donors no priority at all. The starting point should be repeating Israel’s successful system around the world. If this, combined with the proposals above, still leaves a gap, then there is potential to go further. Most current priority systems, including Israel’s, do not provide absolute priority, where existing donors who have been signed up for some period of time are prioritized above all non-donors for transplants, even non-donors in greater need (excluding groups such as children). An absolute priority scheme for cadaveric organs would provide a significant incentive to sign up, if proponents could build and sustain public support for it.
One reason to expect it would work is economic experiments. Judd Kessler and Alvin Roth studied the introduction of a donor priority rule in real-money games with experimental subjects. Subjects played a game over multiple rounds, each consisting of multiple periods. For each period the subject was alive, they earned some amount of money, but faced a certain simulated probability of their brain or kidney failing. If their kidney failed before their brain, they had the option of receiving kidneys from somebody else, and if vice versa, they had the option of donating. The experiment varied the cost the subjects had to pay to donate, and also tested introducing a priority rule, in which only individuals who had agreed to donate their organs upon death would receive organs. Across many rounds of their experiment, those playing the game signed up to give away their fictional organs just as much when paid directly as they did under a priority rule.
Of course, this is only a lab experiment, but it highlights the potential to extend priority systems. Absolute priority may be politically impossible, because it could direct scarce donor organs to people who need them less than others in extreme need. But increasing the amount of priority in the system is worth trying out, as it could dramatically increase the supply of organs donated after death.
Time to try
Incentives have worked for other medical products. Compensating people for donating organs works in the handful of countries that have tried it. And surveys and studies suggest that such compensation schemes could work elsewhere too. Implemented correctly, schemes to prioritize registered cadaveric donors and compensate living ones for their costs might solve most of the existing organ shortage. And because treating these patients is so expensive, paying for organs would give governments more money to spend on other public needs, not less. Experience suggests that although the public is understandably uncomfortable with commoditizing parts of the body, like Iran, they are more comfortable with schemes based around reciprocity or compensation.
Beyond this, xenotransplantation, organ transfer from genetically modified animals, and lab-grown organs are still developing but hold enormous promise for the future. In 2022, the first transplantation of both pig kidneys and hearts to humans were conducted. As yet, no patient has yet survived more than 60 days with either. But Metaculus, a prediction platform, gives a 75 percent probability that artificial organs will have been developed in a lab by 2035.
While we wait, changes in incentives could save tens of thousands of lives and alleviate the suffering of hundreds of thousands more.
Costs in the US are even higher. Dialysis costs close to $100,000 in medical expenses alone (including dialysis, associated medication, and collateral care for complications from dialysis) every year, not counting lost wages, care time from families, or other costs.
The original version of this article said that blood plasma was the US's tenth largest export, and worth 2.7 percent of US exports by value. This is widely cited around the internet, but it seems that this fact is debatable. The trade code it is primarily non-blood products like vaccines and fetal bovine serum. Our figure of 0.6 percent is based on including trade codes 3002.12.0010, 3002.12.0020, 3002.12.0030, 3002.90.5210, 3002.13, and 3002.14, but excluding 3002.15, which includes vaccines, cell cultures, toxins, and monoclonal antibodies, and is mostly driven by vaccines.
This threshold is 25 percent not zero, as all donors have to be compensated, including those who would have donated without the incentive scheme.