They’re Coming for Your Organs...Sort Of
Changes in the rules around who can give and receive organs threaten the long-term viability of the donation system.
The scene comes straight out of a nightmare: a callous surgeon, a greedy administrator, a hastily prepped surgical theater, and a patient—unconscious but alive, struggling to make their will to live known as the surgeon begins the process of removing their organs. It's a scenario from a horror film. Or, we imagine, if it happens in real life, it must be somewhere else, in a country with a black market for organs, to people living far riskier lives than our own. It’s hard to believe that something like this could happen at the hospital down the street—or that it could be happening with any regularity.
For years, I encouraged people to become organ donors. I stressed that doctors were not eager to hasten death to extract organs or feed a ravenous transplant list. I emphasized that, while the organ donation list is not the straightforward queue many people imagine, it is largely fair—matching organs with recipients based on distance, body size, illness type, and deservingness. Wealth, status, and race are not factors, at least not directly. And "deservingness" is not a loose value judgment, but a quantitative calculation based on medical urgency, time spent on the waiting list, and pediatric status.
I was a believer in the system—as boring and credulous as that sounds. But an executive order from the first Trump administration, and the way it has metastasized through the organ donation industry, has thrown all of that into doubt. I’m no longer as confident in the system as I once was. And while I wouldn’t tell anyone to tear up their organ donor card, the pressure to procure more organs is raising serious ethical concerns.
Some Context
In the United States, Organ Procurement Organizations (OPOs) are central to the donation process. These federally approved nonprofits work with families of the deceased to gain consent before facilitating organ recovery and transport. For years, OPOs operated under strict protocols intended to build trust in a system that depends on the altruism of patients and their families. But, as Brian Rosenthal recently reported in The New York Times, two significant policy changes have loosened these protocols to mixed results.
The Changes
The first major change allows surgeons to extract organs from patients who have experienced circulatory death (permanent cessation of heart and lung function), rather than just brain death (the cessation of all brain activity, including in the brainstem). Brain death is the less ambiguous death, and previously only brain death qualified a patient for organ donation. But now, circulatory death, under the right circumstances, can also render a patient eligible for organ donation. This form of death relies on a doctor’s judgment, which is vulnerable to error and further complicated by the unpredictability of bodily systems. Most patients who experience circulatory death will not recover, and many truly are dead by any ethical or legal standard. But this small window of subjectivity opens the possibility that some patients could be misdiagnosed as dead, and therefore alive when their organs are removed.
The second major change involves organ placement. Previously, OPOs followed strict guidelines about how and to whom organs were allocated. They were required to work their way methodically down the donor list, calling each patient’s doctor and giving them the opportunity to accept the available kidney, heart, or lung. The new guidelines allow OPOs to exercise more discretion, and they are certainly taking advantage of this new flexibility. According to Rosenthal, nearly 20% of organs now bypass the top candidate on the list—up from only 3% in 2020. The argument is that this will allow them to place organs more quickly and more efficiently, but the results have been mixed at best.
The Results
These changes are driven by a well-meaning goal: to increase organ supply and save more lives. Permitting donation after circulatory death means more organs, after all, and the organ supply has increased. From 2020 to 2025 nearly 14,000 more organs became available for transplant. This is no minor bump quantitatively or qualitatively. Patients and their family’s wait for years on transplant lists; by one estimate 13 people die daily waiting for an organ. The need for more organs is real and consequential. And giving OPOs more flexibility in placement could, at least in theory, prevent organs—with their short out-of-body lifespans—from perishing unnecessarily. Another boon for the industry. However, OPOs that more frequently divert from the standard organ donation list protocol did not have a lower discard rate (a measurement of how many viable transplant organs go unused). And as The New York Times notes, under the new system, organs are more likely to be placed with white or Asian men and those with college degrees. So despite the increased flexibility, this change does not seem to have increased efficiency. Worse, both changes threaten to undermine confidence by playing into the exact fears most patients cite regarding why they abstain from donating their organs.
According to a 2008 study, In Their Own Words: The Reasons Why People Will (Not) Sign an Organ Donor Card,1 the most common reason for refusing to donate organs is "a deep mistrust of the institutions involved." Beneath this broader umbrella of institutional mistrust, are two major fears.
The number one cited fear was that doctors would declare death prematurely to obtain organs. Though there’s no evidence of widespread abuse, under the new regulations there are documented cases of surgeons beginning procedures on patients declared dead, only to find their hearts still beating. In some cases, “resistance” behaviors, like biting on breathing tubes or lifting legs, have led doctors to abandon organ procurement surgeries. In others, these behaviors have been dismissed as unconscious reflexes, and the procurement continued.
The second most common fear underpinning institutional mistrust was inequity in access. Participants feared that wealth and celebrity would play a role in determining who received an organ. They worried about their organs going to someone undeserving—a bad person, or someone who had skipped the line—and they did not want to participate in what they perceived as a corrupt system. While celebrity and wealth are not official factors in organ allocation, these fears speak to real problems around who is skipped and who is prioritized, especially when decisions rely on ambiguous rules or subjective judgements.
In my book Field Guide to Falling Ill, I wrote about Anthony Stokes, a young Black man in Atlanta whose hospital had denied a heart transplant due to his tattoos, juvenile record, and assumptions about his likely “non-compliance.” Stokes wasn’t an ideal candidate, but he was also a teenager being denied a future, and this denial tracked larger structural and historical inequities with uncomfortable precision. A study in Transplantation found that Black Americans are four times more likely to develop kidney failure but are significantly less likely to receive a transplant.2 CDC data shows that Black men are among the most vulnerable to heart disease but among the least likely to receive a transplant; when they do, it typically takes an extra year on the waiting list.3
Having your organs removed while you’re still alive is the stuff of nightmares—a personal, localized horror. But it is only the most sensational consequence of the new policy. Beneath the surface lies another, quieter, and more diffuse horror. One you might never even find out about. One that affects many more people. The horror of being skipped on the list because someone else had better connections, a more prestigious hospital, or a relationship with the right OPO.
It is easy to imagine these disparities emerging from two well-meaning parties. OPOs want to place organs efficiently. They are empathetic to the hospitals, doctors, and patients they have stronger relationships with—but, of course, it is wealthier hospitals, and therefore wealthier patients, who have the resources to cultivate these connections and grease the wheels of procurement. Here, individual empathy for patients becomes a hindrance to equitable care.
What’s Next
Beyond the horror of removing organs from a patient who is still alive—who might even have a shot at recovering—it is clear that these new policies are amplifying existing biases within the system. I worry about who is being hurt directly, but also who is being hurt indirectly. I worry about who is being skipped, and how the failures these changes exacerbate will deepen public skepticism of an already fragile system.
I still believe in the possibilities of organ donation; I would like to see more organs available for transplant, but it is clear to me that doctors, OPOs, and the government must develop clear and strict standards around circulatory death and return to following strict protocols regarding the transplant list. Despite the recent increase in available organs, if they do not, we may in the long run end up with fewer donors—and thus fewer transplants—because of it.
Susan E. Morgan et al., “In Their Own Words: The Reasons Why People Will (Not) Sign an Organ Donor Card,” Health Communication 23, no. 1 (January 25, 2008): 23–33.
Yue-Harn Ng et al., “Does Racial Disparity in Kidney Transplant Waitlisting Persist after Accounting for Social Determinants of Health?” Transplantation104, no. 7 (October 14, 2019): 1445–55.
R. E. Patzer et al., “The Role of Race and Poverty on Steps to Kidney Transplantation in the Southeastern United States,” American Journal of Transplantation 12, no. 2 (January 10, 2012): 358–68.