The contemporary administrative state has truly honed the skill of complicating basic human interactions into an almost perpetual ordeal. Nowadays, even the most straightforward family matters in the U.S. can devolve into a bureaucratic nightmare. Yet, what unfolded for an Ohio mother is particularly distressing.
When Andrea Mauck’s son Damon, aged 18, unexpectedly passed away, he wasn’t on the organ donor registry. Andrea had raised him primarily on her own, as his biological father had been distant for many years, had little engagement in his life, and, according to Andrea, wasn’t even recorded in the hospital’s documentation.
Federal inquiries later revealed at least 28 cases where patients might not have been deceased when the organ procurement efforts commenced.
However, Andrea shared that during a brief period without cell service, staff from the hospital and the organ procurement organization turned to Damon’s biological father. About thirty minutes after their attempts to reach her, she received a single call from him, permitting the retrieval of Damon’s eyes and tissues. It’s noteworthy that some of this tissue is set to arrive in Argentina.
Who makes the call?
This situation raises unsettling questions for conservatives who view the family as society’s core unit, particularly regarding custody and consent. Under Ohio’s version of the Uniform Anatomical Gift Law, both parents of adult children are treated equally when it comes to approving donations.
If one parent consents, the donation can proceed unless there’s knowledge of the other parent’s dissent. The law mandates that authorities account for which relatives are “reasonably available,” essentially hinging on how quickly they can be reached within tight medical timelines.
This raises the critical question of what constitutes a “reasonable” timeframe, especially when a mother is unaware someone is seeking permission to take her child’s body parts.
“My son’s father was completely absent from my son’s medical history. He wasn’t listed as an emergency contact or authorized under HIPAA, and honestly, I don’t even know how he was contacted,” Andrea recounts.
While the parents arrived at the hospital after being alerted by members of the community, nobody informed them about the donation process. Even when Andrea called the hospital, she alleges the staff kept her in the dark. At one point, the OPO had Damon’s father complete an extensive medical history questionnaire—concerning a son he barely knew. This poses an obvious question about the reliability of such medical information.
Organ trafficking
Delving further into the situation unveils a more disturbing picture. In America, organ donation is generally viewed as a noble act of generosity. Yet, a significant commercial side exists within this schema.
If an individual dies without being registered as an organ donor, relatives can authorize donation on their behalf. However, the federal regulation system has certain incentives for securing this approval, given that rate data for donations and transplants are closely monitored. The performance of organ procurement organizations (OPOs) directly affects their certification status and service capability, which raises concerns that they may turn the emotional decisions of grieving families into mere performance metrics—especially when some OPO executives earn significant compensation.
There are notable gaps in this realm, defined clinically as “Anatomical Gift” for tissues like skin, bone, ligaments, and eyes. Although federal regulations bar the outright sale of human tissue for transplantation, they permit organizations to charge for handling processes like collection, storage, and distribution. In simpler terms, while the tissue itself cannot have a price tag attached, virtually everything related to its post-donation handling can incur charges. This results in a peculiar paradigm where donors receive nothing, but the organizations profit immensely, whether they are nonprofits or for-profits.
Andrea explains, “My son’s tissues were sold to an international hospital in Argentina, and his skin and ligaments were sold to a biopharmaceutical research firm. This is a multibillion-dollar enterprise.”
Legally, there’s a distinction within the industry between selling human tissue and charging for the associated services of collection and processing. To a grieving mother who didn’t consent to the donation in the first place, this difference might feel rather abstract.
“I have doubts about consent.”
The issues surrounding procurement practices extend beyond Andrea’s troubling experience.
Last year, the Department of Health and Human Services investigated 351 instances where organ donations were authorized but ultimately not realized. Investigators discovered troubling elements in 103 cases, including what HHS characterized as “questionable consent practices.” There were reports of 73 patients showing neurological signs incompatible with organ donation, and at least 28 individuals may not have been deceased when the procurement efforts began. HHS has since mandated corrective actions and launched extensive reforms aimed at bolstering safety measures in the system.
Concerns persist. Recently, the Centers for Medicare and Medicaid Services issued new guidance demanding that families be afforded adequate time to make informed decisions regarding donations without feeling pressurized. This change followed complaints about OPOs rushing certain procedures and putting undue pressure on bereaved families.
Andrea’s own quest for answers led her to the Ohio Supreme Court. The public records lawsuit seeks information relating to her son’s death and the management of personal effects, including cash and an iPhone, reportedly handed over to a man asserting he was Damon’s father—rather than contesting the legality of his father’s consent to donate. Ultimately, Andrea secured a partial victory, receiving $2,000 in damages for records that were improperly withheld.
She also had to navigate probate just to access some of her son’s documents. After two years and a hefty financial commitment, Andrea expresses that she is still piecing together the circumstances surrounding her son’s passing.
Clearly traumatized and understandably upset, she noted that for 18 months, she repeatedly attempted to contact Representative Max Miller (R-Ohio) but received no meaningful reply.
“Damon’s Law”
But it’s not all bleak. Andrea is now advocating for reforms she has dubbed “Damon’s Law,” which aim to bolster informed consent and family rights in the organ and tissue donation process. As of now, over 16,000 individuals have signed a petition on Change.org urging Congress to take action on these reforms. The growing pressure should compel lawmakers to take notice.
The changes Andrea proposes focus on achieving basic transparency and accountability. She asserts that states should necessitate that DMV personnel clearly outline what organ and tissue donation involves, rather than permitting one-time registrations to exist indefinitely without requiring donors to reaffirm their intentions.
This isn’t purely a theoretical concern. According to Ohio law, once someone registers as a donor through their driver’s license or ID, that authorization remains in effect until it is explicitly rescinded. Donors don’t have to confirm their intentions upon renewal, and even if a license expires or is revoked, the gift retains its validity.
Even the process for withdrawing consent can be deceptive. Ohio law delineates between revoking an anatomical gift and refusing a gift outright. Revoking doesn’t signify a refusal and may not preclude an authorized relative from recognizing the donor posthumously, while a formal, irrevocable refusal typically bars others from making donations.
This might be clear to lawyers, but I wonder how many everyday Ohioans truly grasp the implications of checking or unchecking a box at the DMV.
Andrea is also pushing lawmakers to create explicit regulations in recognizing family members’ roles. She wants to ensure that estranged biological parents can’t make irrevocable decisions without the involvement of those who were present in the deceased’s life, providing a meaningful avenue for objection. Andrea Mauk wants a system that actually supports families instead of failing them.
I believe any reasonable person would want their family members to be fully informed about what they are agreeing to and to have a real say in the decision before it becomes permanent. Without substantial legal changes, the system that let Andrea and Damon down could easily repeat itself for another family.
