Two summers ago, Raven Kinser went to a Virginia DMV office and left the organ-donor box on her license application unchecked to reflect her decision to revoke an earlier registration. Six months later, after she was declared dead at Riverside Regional Medical Center in Newport News, her parents say they learned that organs had been recovered anyway — based on an older donor registration from Michigan.
The Kinser family’s experience highlights a little-known vulnerability in U.S. organ-donation practice: there is no single, nationwide, legally binding way to opt out that guarantees a later “no” in one state will override an earlier “yes” in another. That fragmentation, together with questions about organ procurement organizations’ consent practices, has attracted bipartisan attention in Congress and spurred calls for greater accountability.
How the system works
Organ procurement organizations (OPOs) are private nonprofit entities that hold exclusive federal contracts to recover organs in defined regions. Hospitals are required to refer deaths and imminent deaths to OPOs, which manage donation discussions and make determinations about recovery. OPOs are regulated by the Centers for Medicare & Medicaid Services and overseen by the Health Resources and Services Administration, but oversight is frequently carried out through certification standards, performance metrics, audits and guidance rather than routine public disclosure.
The Kinsers say the hospital referred Raven to LifeNet Health, the federally designated OPO for the region, and that LifeNet told them Raven was a registered donor based on her earlier Michigan license. They contend Raven’s Virginia license, which showed no donor designation, was not turned over in time to challenge the OPO’s determination. LifeNet says it follows federal law, queries state registries, and relies on timestamps and governing law to determine the most recent legally valid expression of intent; a prior authorization can remain enforceable unless a valid revocation is recorded in the regional registry. Privacy laws prevented LifeNet from commenting on specific cases.
Virginia’s registry manager, Donate Life Virginia, said changes made during a DMV transaction are sent to the registry and updated daily, and that the state registry retains records only for people who have affirmatively said “yes.” The Kinsers say they were not told why the Virginia DMV record was considered insufficient or how an older “yes” could outweigh a newer “no.”
Why records can conflict
The fragmentation arises from the system for recording donation intentions, which is governed by 50 sets of state laws and most commonly implemented through DMV transactions. States differ on when a registration takes effect, what it covers (for example, transplantation vs. research or tissue donation), and how it can be revoked. Under state-adopted versions of the Uniform Anatomical Gift Act, a donor’s most recent legally valid expression of intent should control, but states vary on how revocations must be recorded and which registry is authoritative for people who have lived in multiple states. Those inconsistencies create uncertainty when records conflict across jurisdictions.
For example: Michigan updates a person’s donor status immediately in its secretary-of-state system but retains only affirmative “yes” registrations in the public registry, with removals kept in internal motor vehicle records. Virginia’s registry lists only affirmative donors. New Mexico updates driver records in real time but does not transmit status changes to its donor registry; OPOs there receive restricted search access. States also report widely different volumes of registrations and removals, reflecting differing collection and transmission practices rather than consistent demand.
The practical effect can be that an older affirmative entry in a registry — or the absence of a recorded revocation in that registry — is treated as controlling, even when a more recent DMV application in another state indicates revocation.
Calls for change and regulatory activity
The Kinsers asked federal regulators to investigate LifeNet, to require OPOs to provide families documented proof of a donor’s current status at the time of referral, and to subject OPOs — which operate as regional monopolies under federal contracts — to public records laws. They also urged that OPOs be barred from relying on older registry entries when a more recent DMV record exists and suggested criminal penalties for knowingly misrepresenting consent. Federal regulators have not indicated whether they will adopt those proposals.
Congressional interest and agency responses are under way. A House Ways and Means subcommittee held a hearing last year on alleged consent failures and called for greater accountability. Sen. Ron Wyden has proposed legislation to create federal standards for patient safety, transparency and oversight in organ transplants, including authority to pause organ recovery if there’s any clinical sign of life. HHS has said it is committed to holding OPOs accountable, and CMS issued guidance aimed at strengthening protections and accountability, though critics contend those measures do not address the Kinser family’s core concern about conflicting records.
Modernizing data systems and a national registry
HRSA is carrying out a major modernization of the Organ Procurement and Transplantation Network (OPTN), the national system that governs organ allocation and transplant policy. Officials describe the overhaul as the most significant restructuring in decades, intending to break up a contractor monopoly, strengthen patient-safety oversight, and replace aging technology. Improved OPTN data systems could boost interoperability, create clearer audit trails, and make it easier to trace which registry was queried, which timestamp controlled, and how a consent determination was reached in multi-state disputes. But a federal data architecture alone would not change the state-by-state legal rules that determine what constitutes a valid revocation.
Donate Life America operates a National Donate Life Registry that allows people to sign up directly, view, update or remove registrations, and print proof of their choice. The organization is working on a project to let participating states send registrations into the national system, creating a central place to track sign-ups and removals across state lines. Advocates and OPOs note trade-offs: adding more data without auditing and verification may not resolve conflicts unless systems are designed to check and reconcile records.
Ethics, trust and family perspectives
Ethicists say consent must be more than a checkbox; it should respect autonomy and be reliably documented. Medical societies emphasize that clinicians’ primary duty is to the patient in their care and that trust requires transparency and safeguards so procurement activities do not blur that duty. OPOs argue that durable consent prevents families from overriding a loved one’s documented “yes” in moments of grief and reduces missed donations, which can save lives.
The Kinser family does not say they oppose organ donation — Raven’s obituary acknowledged her gift — but they object to what they view as decisions made without clear, documented proof of her wishes. Their case underscores how gaps between state systems, agency practice and on-the-ground processes can leave families confused and grieving, and how technological and legal reforms are being debated as possible remedies.
KFF Health News is a national newsroom producing in-depth reporting on health issues and is part of KFF, an independent source for health policy research, polling and journalism.
Editor’s note: This story has been updated to clarify the wording on Virginia’s driver’s license applications.