WP3 Blog 1: Ethical Dilemma Between The OPTN/UNOS and the Federal Court in Organ Allocation System

The topic I would like to expand on is the lung transplant allocation system monitored by The United Network for Organ Sharing (UNOS) and the federal court, carrying the ethical dilemma of prioritizing patients on the waitlist based on ways other than medical evidence/evaluation.

The "Under 12 Rule" of UNOS before 2014 denies children under 12, without a doctor's proof of their eligibility for an adult lung transplant, to be considered for the adult transplants waitlist. Children admitted to the list are usually at the bottom of the list. Due to the scarcity of transplants for children under 12 (i.e. adult's lung transplant pool = >50 that of children's; most children die waiting for available and compatible transplants), most parents are desperate to forward lawsuits to increase their children's chance of survival through the adult waitlist. In June 2013, the case of Sarah Murnaghan, an 11-years-old Philadelphian girl diagnosed with severe cystic fibrosis, spurred a debate titled "age discrimination" in the rule as Kathleen Sebelius, the Secretary of Health and Human Services, refused to grant Sarah an exception to the rule before the board of directors of Organ Procurement and Transplantation Network (OPTN) finish reviewing the policies. Considering her extreme necessity and limited time left to live, judge Tom Price overrode the OPTN's decision to make an exception to Sarah's case. After a couple months, Sarah Murnaghan survived by receiving a double-lung transplant at New York Hospital. The OPTN board of directors officially updated the pediatric organ allocation rules through "Ethical Principles of Pediatric Organ Allocation" in November 2014, introducing "pediatric priority in organ allocation" under the considerations of "the Prudential Lifespan Account, the Fair Innings Argument, the 'Maximin' Principle, and the concept of utility," allowing exceptions to the age restriction on a case-by-case basis.

The case of Sarah conflicts with the pillar of justice in bioethics. Sarah's case received considerable support through media exposure as Sarah’s parents successfully challenged the court to restrain the under-12-rule from Sarah’s case. However, the court intervention granted Sarah priority on the waitlist without a solid medical evaluation by the OPTN, conflicting with the purpose of the organ allocation system that ensures organ allocation is an equitable system instead of a competition. A peer-reviewed medical article in December 2013 from Dr. Stuart C. Sweet and Dr. Mark Lee Barr suggests "a change to the allocation system" on lobar transplant for pediatric candidates "would be premature" due to a lack of "data supporting the approach." Especially for rare transplants like lungs, such an overrule biases Sarah's case over the adult eligible candidates, setting other candidates at risk of death without careful evaluation. Even with the rule changed in favor of the case a year after OPTN's evaluation, the judge's decision at the time was arbitrary and unjust. 

Privileging the adult candidates over Sarah, or other children on the adult list would also conflict with the pillar of justice and beneficence. The pediatric lung donor pool is high in scarcity. With the chance minimized from the adult pool despite the severity of their condition, most children die waiting for available and compatible transplants. Philosopher John Rawls suggests inequality in organ allocation systems is only tolerable when they're arranged for maximized utility and “the greatest benefit to the least-advantaged members of society.” Pediatric candidates are highly disadvantaged in having an incomplete childhood and education while being constantly at risk of premature death. Since receiving transplants earlier in life increases the likelihood of a productive and fulfilling life, eligible pediatric candidates for adult lungs should be prioritized on the waiting list, making the decision of judge Tom Price justifiable. 

The nature of the court poses a risk to justice in the organ allocation system. Especially when the act of organ allocation carries inequality by itself, the OPTN system is strictly based on medical evidence to avoid organ allocation becoming a competitive game of persuasion. However, the nature of a court allowing persuasion to play a role in the case is against the rule of the system. While the lawyers could utilize pathos to persuade the jury over a case, the final decision has the potential to privilege a patient over another similar candidate due to the deviation of awareness, as exemplified in Sarah's case. While the parents' urge to save a patient is understandable, one must acknowledge the same case for other eligible candidates.