Why People Are Taking Themselves Off Organ Donor Registries

Organ donation is often called “the gift of life,” a deeply personal act that can transform tragedy into hope. But in recent months, a wave of disturbing medical errors, controversial policy proposals, and unsettling headlines has shaken that trust.

Across the United States, and even abroad, more people are quietly removing themselves from donor registries, driven by fears of premature declarations of death, questions about consent, and unease over the role of money in the transplant system.

Let’s take a look at the incidents fueling the backlash, the ethical dilemmas surrounding organ procurement, and what it will take to restore public confidence in a system that depends on faith as much as it does on medicine.

A “Horrifying” Medical Near-Miss in Kentucky

In a startling incident dating back to 2021, a Kentucky man, Anthony Thomas “TJ” Hoover II, was mistakenly declared brain-dead and nearly had his organs harvested. During the so-called “honor walk,” family members witnessed his eyes opening and tracking movement. The harvesting procedure was halted only when signs of life were recognized. Hoover survived but faces ongoing health challenges.

A Congressional Hearing, a Federal Probe, and National Alarm

A House Energy & Commerce subcommittee recently described the events as “fit for a horror movie.” Investigators found that among 351 authorized but incomplete donations, 73 patients showed neurological signs incompatible with death, and at least 28 may not have been dead when procurement began.

Officials highlighted systemic failures, including rushed protocols, poor assessments, and inadequate consent procedures. The Department of Health and Human Services (HHS) is considering decertification of the implicated Organ Procurement Organization (OPO), Network for Hope, and has mandated reforms like checklists and staff training.

A Surge in Opt-Outs—Fear Outweighs Generosity

After the public learned of these incidents, donor registries saw dramatic spikes in opt-outs. For instance, in the week following media coverage, Donate Life America reported an average of 170 daily removals from the national registry, about ten times the prior rate. Similar mass opt-outs were observed in California, Florida, and Colorado.

These reactions underscore how quickly trust can erode, even when mistakes are rare.

The Debate Over Expanding the Definition of Death

Adding fuel to the fire, in a New York Times opinion article a trio of New York cardiologists proposed broadening the definition of brain death including irreversible comas, even suggesting briefly halting a heart to harvest organs more effectively. While intended to increase organ supply, the proposal sparked public outrage and deepened distrust.

Media Reports Fuel Fears

An opinion piece in the New York Post, citing a New York Times report, described instances where patients showing signs of life were nearly subjected to organ removal. The coverage prompted thousands to revoke their donor status in states like California, Florida, and Colorado.

Ethical Dilemmas: Payment, Compensation, and the Gift Model

Organ donation in the United States operates on an altruistic “gift” model, where no one is paid for their organs. Yet behind the scenes, hospitals, surgeons, and organ procurement organizations receive significant reimbursements for the services that make transplantation possible.

While these payments are legal and necessary to cover costs, they raise sensitive questions about how money intersects with a system meant to be driven by generosity—and whether financial incentives could subtly influence decisions at the most vulnerable moments.

Let’s look at the numbers:

• No legal payment for organs in the U.S. The National Organ Transplant Act of 1984 strictly prohibits buying or selling human organs.
• Hospitals receive reimbursement, particularly via Medicare:
  • Organ acquisition costs: Medicare reimbursed Certified Transplant Centers (CTCs) for nearly half of claimed organ acquisition costs—$1.6 billion of approximately $3.3 billion in 2016.
  • Prospective payment system (PPS) + acquisition costs: CTCs bill through Diagnosis Related Groups (DRGs) for transplant procedures, plus separate charges for acquisition costs averaged across organ type.
• New incentive models for kidney transplants:
  • Beginning July 1, 2025, hospitals participating in the Medicare Kidney Transplant Model can receive up to $15,000 per patient for high performance, while penalties max out at $2,000 per patient.
  • The IOTA (Increasing Organ Transplant Access) Model, starting the same date, incentivizes hospitals to increase kidney transplant rates and improve patient-centered care—part of a broader federal effort to boost access and accountability.
• Industry payments to transplant surgeons (not for organs, but for services/products): In one study, transplant surgeons received modest payments from industry—a total of ~$759,654 overall, or a mean of ~$2,558 per surgeon. Payments were largely for consulting fees, travel, speaking, education, or meals—not directly tied to organ procurement.
• Ethical debates about financial incentives: A 1990s UNOS ethics paper considered but generally urged caution regarding financial incentives for donors (e.g., funeral reimbursements), warning they could undermine altruism, create coercion, and transform donation into commercial exchange.

Deepening Mistrust in Medical Institutions

The controversy comes at a time when public trust in medical authority is already fragile. Proposals to broaden the definition of brain death, intended to increase organ supply, have left many uneasy about how end-of-life decisions are made.

Transparency Alone Isn’t Enough

Even when medical organizations acknowledge mistakes, the damage to public confidence can linger for years. Leaders in organ procurement organizations say rebuilding trust is far harder than maintaining it in the first place.

The Emotional Impact

For some, the decision to opt out is less about statistics and more about emotion. The thought of premature or mistaken organ retrieval creates an unsettling picture that overshadows the lifesaving potential of donation.

Ethical Concerns About Consent

Questions about autonomy and informed consent have also surfaced. People want absolute assurance that their wishes will be honored and that every safeguard is in place before organs are retrieved.

The Risk to Those Waiting for Transplants

As more people opt out, the already limited supply of donor organs could shrink further, making wait times longer and reducing chances for patients in need of life-saving transplants.

Rebuilding Public Trust

Experts agree that the solution lies in absolute transparency, strict procedural safeguards, and consistent public education. Without these measures, the decline in donor participation may continue, putting countless lives at risk.

The Takeaway

Organ donation saves thousands of lives each year, but it can only function when the public believes in its integrity. Even rare mistakes can ripple through the system, sparking fear and driving people away from donor registries.

Add in complex questions about consent and the financial realities of transplantation, and the need for absolute transparency becomes undeniable. Rebuilding trust will require rigorous safeguards, open communication, and a renewed commitment to honoring both the generosity of donors and the dignity of every patient.