Respecting Organ Donors Means Respecting Their Decisions Even When Families Disagree

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Respecting Organ Donors Means Respecting Their Decisions Even When Families Disagree

In her recent article for CBS News, Dr. Céline Gounder raises important concerns about inconsistencies in how organ donor status is tracked across states. She is right that the system can be complex and, at times, confusing. But the conclusion some readers may draw—that the system is ethically suspect or insufficiently protective of patient intent—misunderstands a central feature of U.S. organ donation law: it is designed to protect the autonomy of the donor when the donor can no longer speak for themselves.

Under the legal framework governing organ donation—most notably the Uniform Anatomical Gift Act (UAGA)—an individual’s documented decision to donate is not merely a preference. It is a legally binding gift. Organ procurement organizations (OPOs) are required to honor that decision, even in the face of family objection, because allowing others to override it would fundamentally undermine personal agency at the end of life. The system’s insistence on enforcing donor intent is its most important ethical safeguard.

Organ donation is based on estate law, which holds that your Last Will and Testament cannot be changed by your family or anyone else. Relying on estate law serves the interests of registrants because many choose not to tell their families that they have registered, knowing they may object. 

According to Gounder, Kinser’s parents believed she had changed her mind about organ donation. She had opted in when obtaining a drivers’ license in Michigan. But when she moved to Virginia, the family maintains she meant to communicate that she no longer wished to be a donor when she left the organ donor box blank at the time she obtained a new drivers’ license. When Kinser died, her parents learned she was still on the record as an organ donor, according to her region’s federally designated OPO.

As the article notes, OPOs are required to determine the “most recent, legally valid expression of intent” and rely on registries and time-stamped records to do so. The purpose of that process is to ensure an individual’s own decision—not the preferences of surviving relatives—governs what happens to their body. What the Raven Kinser case illustrated was a problem of data synchronization and administrative fragmentation, not a failure of the ethical framework itself.

Gounder is correct that de-registration processes are convoluted and inconsistent, which policymakers at both state and federal levels are beginning to address. California, for example, recently reformed its processes, including putting a simple removal mechanism on the Donate Life California registry website’s home page. Other states have taken steps to sync residents’ registration and deregistration decisions more rapidly to allow changes in intent to be reflected in real time.

It is important to understand why the system errs on the side of honoring a “yes” even when the family sincerely believes their loved one changed their mind. Organ donation operates in a narrow clinical window, measured in hours. Introducing uncertainty about whether families can revisit or reinterpret a donor’s decision would effectively give veto power to third parties—precisely what organ donation law has sought to prevent.

Critics sometimes frame this as a tension between families and the system. In reality, the modern transplant framework was built to resolve such conflicts in favor of the donor’s wishes. That choice reflects a broad societal consensus: that individuals have the right to make binding decisions about their bodies after death, just as they do in life.

The laws of state-based donor registries are very clear, and the same in every state. A person remains registered until they remove their registration. Simply failing to re-register does not revoke your earlier registration. Like a will, you don’t have to redraft it every time you move or get a new license.

People may choose not to register because they have already registered, or because they wish their family to make the decision, or because they have made their gift wishes known on another, private document.  The way to say “I do not wish to be a donor” has been clearly stated since the original UAGA in 1968. Simply draft a document saying this, and tell your family, for good measure.

None of this means the system can’t be reformed. A more unified national registry, clearer mechanisms for revoking consent, and better transparency for families would strengthen trust and reduce the kinds of conflicts described in the article. But reforms should build on—not weaken—the core principle that has made organ donation possible at scale: the donor’s voice must be the final word.

Undermining that principle would not restore trust. It would erode it—and ultimately reduce the number of lives saved.