Among the foremost barriers to organ donation in the US are medical mistrust, misunderstanding brain death, and the “ick factor”- a disgust response to the concept of transplantation. On the structural side, process inefficiencies contributing to unsatisfactory donation rates have been identified. Effectively addressing these barriers with interventions that target both the public and healthcare systems could close the gap between potential and actual donor pools.

Medical mistrust and misperceptions about brain death have been shown to dissuade people from donating their organs. Unless personally affected by transplantation, the public’s understanding of organ donation is largely formed by the media, which commonly depicts it negatively, employing sensationalized storylines that promulgate the ick factor.  Unwilling donors cite negative information they received from the media as justification for opting out of organ donation. After watching uplifting presentations that encourage donation, viewers were more likely to become donors. Information delivered via relatable stories in the media triggers the empathy hormone oxytocin and can influence behavior.

The Big Donor Show was a hoax reality show aiming to draw attention to the organ shortage in the Netherlands. A presumed terminally ill woman would choose which contestant would receive her kidneys postmortem. A month after airing, 7,300 people registered to be organ donors. In 2012, Facebook enabled users to share their organ donor status and provided links for easy registration. There were 13,012 new registrations on the first day. Normalization of organ donation through education and sharing real stories that dispel myths, engender trust, and increase the appeal of donation can increase donations.

Organ procurement organizations (OPOs) are the interface between the decedent’s family and the healthcare system. Studies have shown up to 400% variability in the performance of OPOs nationally. One study found that the potential donor pool was 3.85 times greater than the actual donor pool. Ameliorating barriers and sharing best practices among OPOs could significantly improve organ supply. Multiple reports have shown that interventions that identify and address obstacles like simplifying registration by employing online platforms, apps, and incorporating organ donor discussions into routine interactions with healthcare providers increase registration rates.

It has long been debated whether organ donation rates in the US could be increased by replacing the current policy to opt-in to being an organ donor to an opt-out (presumed consent) policy, as exists in countries like Austria, Spain, England, and others. The argument in support of presumed consent in the US is predicated, in part, on the gap between the percentage of Americans who indicate that they would like to be an organ donor (95%) and the percentage of Americans who actually register as donors (58%). Individuals yield to the default option when faced with a difficult decision. The US default position is no donation. Switching the default to donation aligns with the stated intention of most citizens, while providing the autonomy to choose not to donate for those who truly object.

It may be simplistic to assume that an opt-out policy will increase donation rates in America. That strategy may work in one culture, but not another. The US Institute of Medicine is concerned that introducing presumed consent without ensuring public support for transplantation could reduce donation rates in the US, where autonomy is highly prized and medical mistrust prevails. The introduction of opt-out consent in France and Brazil had a detrimental effect on donation, which was partly attributed to intensified mistrust towards healthcare professionals. Public acceptance of organ donation and faith in the medical system (both identified barriers to donation) are likely prerequisites to successful implementation of an opt-out policy. Spain, an opt-out country, has high rates of organ donation. Factors other than the consent policy contribute to Spain’s success. These include a culture that prioritizes organ donation, strong public support of the transplant system, a dedicated budget, and accountability for performance. Spain’s healthcare providers are routinely trained on how to empathically approach grieving families illustrating the importance of educating both the citizenry and the providers.

There is concern that risk-aversity in the US results in organ waste. One study found that 62% of kidneys discarded in the US would have been transplanted in France, which has more permissive organ acceptance practices. Researchers estimated that 17,435 kidneys were “lost” due to conservative US procurement practices during the 10-year study period. Since survival rates determine hospital ratings and eligibility for Medicare funding, hospitals are incentivized to only perform transplants with a high likelihood of survival.  One study followed patients whose transplant team declined an offer of a kidney, 93% of the refusals were attributed to poor organ quality. About 30% of those patients either died on the waitlist or were removed for being too sick. The authors recommended that patients be made aware of all kidney offers and allowed to consider accepting lesser quality organs rather than continuing dialysis and possibly going without a kidney.

These factors illustrate that the problem is not simply donor paucity, but also systematic mismanagement and perverse incentives. Addressing these problems would improve organ transplant rates and shorten waitlists without needing to find new sources of organs.

Not all donated organs are fit for transplant. Generally, donated organs must be transplanted within hours after procurement. Researchers published a successful one-year follow-up of a case where the liver was procured three days prior to transplant. The liver was initially rejected due in part to the presence of a tumor. Using machine perfusion, the team was able to buy time for pathological analysis of the tumor, which  was benign, rendering it viable for transplant.

Organs procured during weekends are more likely to be discarded than those procured during the week. The quality of kidneys discarded on weekends is higher than those discarded during the week. This suggests that “organizational and systemic factors” contribute to the high rate of kidney discards. Interventions to overcome this “weekend effect” and/or extend organ viability could mean fewer discarded organs.

While xenotransplantation seems appealing, at this point it is not necessary. There remains room for improvement in enrolling donors, achieving systemic efficiencies, and eliminating waste. Closing the gap between potential and actual donors may alleviate the organ shortage without relying on sentient animals, whose rights to live without being genetically manipulated and serving as an organ repository for humans, have not been adequately considered.

Randi Fain MD, MS is a member of the Innovative Bioethics Forum and on the Board of Directors of the Empire State Bioethics Consortium.