American Journal of Law & Medicine

Rejecting organs: the organ allocation process and the Americans with Disabilities Act.


On January 23, 1996, thirty-five-year-old Sandra Jensen became a pioneer in medical history as the first person with Down's Syndrome to undergo heart and lungs transplants.(1) Based on her mental retardation, Stanford University and the University of California at San Diego initially rejected Jensen's candidacy for the procedure.(2) The surgeons believed that a person with Down's Syndrome lacked the mental capacity to navigate through possible complications that could occur after the transplantation, even though Jensen, a disabilities activist, had lived on her own since the age of twenty.(3) Eventually, overwhelming pressure from community members, advocacy groups, family and friends forced the hospitals to reconsider and, after closer inquiry, Stanford surgeons admitted to misjudging Jensen's ability to comprehend her condition and to handle her own care.(4) A month after surgery, Jensen took her first trip outside Stanford Medical Center to begin her journey toward recovery.(5)

Jensen expressed the hope that her story would "open doors for others with disabilities who are in need of transplants."(6) In fact, her experience prompted local politicians to consider legislation barring discrimination against mentally disabled individuals in need of transplants.(7) "This is too important to just cross our fingers and hope that federal law will protect these individuals.... This is often a life-or-death matter for patients. They don't have time to wait around for the court to interpret a vague law," stated Assemblyman Antonio Villaraigosa.(8) Questioning the effectiveness of federal antidiscrimination laws, namely the Americans with Disabilities Act (ADA or "Act"),(9) in ensuring equal consideration and access to scarce transplant organs for people with disabilities begins with an inquiry of why the current organ allocation policies fail to account adequately for these individuals' candidacy. Although not all Down's Syndrome patients or other persons with disabilities would qualify as suitable candidates for transplantation surgery, denying a person's candidacy without individual evaluation runs counter to the public policy protections outlined in the ADA.

This Note examines the intersection of the ADA and the organ allocation policies set forth by the United Network for Organ Sharing (UNOS). Part II outlines the legislative background surrounding federal disability law and organ transplantation. Part III assesses the fairness in the organ allocation process to shed light on equity issues in distributing such scarce resources. Part IV analyzes how the UNOS policies interact with the ADA to reveal a tension between UNOS' point system and the reasonable accommodation requirement of the ADA. Finally, Part V explores suggestions for a more equitable system of organ allocation and demonstrates how UNOS may resolve these tensions.



The ADA recognizes, both in its language and legislative history, that discrimination against individuals with disabilities involves not only invidious conduct but also discrimination emanating from "biases inherent in social culture."(10) Indeed, Congress enacted the ADA to create a clear mandate to end discrimination against people with disabilities in employment, public or private education, transportation, health care and access to any other public or private services or programs.(11) The ADA contemplates that most discrimination against the disabled manifests itself in presumably neutral eligibility criteria, which, in practice, consistently tend to disadvantage individuals with disabilities.(12)

To level the playing field, the ADA [sections] 12182(b)(2)(A)(ii) requires covered entities(13) to provide reasonable accommodation for individuals with disabilities. Reasonable accommodation requires "modifications in policies, practices, or procedures, when such modifications are necessary to afford such goods, services, facilities, privileges, advantages, or accommodations to individuals with disabilities."(14) However, if a covered entity establishes that "making such modifications would fundamentally alter the nature of such goods, services, facilities, privileges, advantages, or accommodations"(15) or that taking such steps "would result in an undue burden,"(16) the law may exempt it from the provisions of the Act.(17)

Chapter Three of the ADA, entitled "Public Accommodations and Services Operated by Private Entities," applies to health care services.(18) The Act prohibits the imposition of eligibility criteria that screen or tend to screen out an individual or any class of individuals with disabilities from equal use of the services of the entity.(19) However, an entity may avoid the ADA provisions if it can demonstrate that the criteria are necessary to the services it offers.(20)

Despite the ADA's broad statutory coverage, courts narrowly read the protections of antidiscrimination laws, such as the ADA, and narrowly apply them in cases involving health care.(21) For example, in the landmark case United States v. University Hospital, State University of New York at Stony Brook,(22) the Second Circuit Court of Appeals rejected a discrimination claim under section 504 of the Rehabilitation Act(23) where a hospital honored the parents' decision not to perform corrective surgery on their child who was born with spina bifida, microcephaly and hydrocephaly.(24) The court suggested a difference between treatment for a condition related to the patient's disability versus treatment unrelated to the patient's disability.(25) This distinction assumes that antidiscrimination laws only work to "ensure that similarly situated persons receive the same treatment."(26) Under the court's rationale, antidiscrimination laws would apply to a doctor who refuses to perform ear surgery on a patient with AIDS (a condition unrelated to the patient's disability) but would not apply to a doctor who refuses to perform corrective surgery on a child with spina bifida (a condition related to the patient's disability).(27) In other words, an AIDS patient gets the treatment because ear surgery is not unique to AIDS patients. However, no similarly situated counterpart to the child with spina bifida exists. Thus, because only spina bifida patients could possibly need the corrective surgery, antidiscrimination laws, such as the ADA, would not ensure access to the treatment.

University Hospital also demonstrates how the health care industry avoids the mandate of antidiscrimination laws. The court invoked the "bona fide medical judgment standard," which focused on whether the patient's ability to benefit from the treatment related to the patient's disability.(28) In University Hospital, the physicians decided that the baby's disability excessively limited any benefit the baby might receive from the treatment.(29) Thus, the "bona fide medical judgment standard" led the court to conclude that performing the procedure was not required under section 504 of the Rehabilitation Act.(30) This rationale provides courts with another method to distinguish health care from other services covered by antidiscrimination laws.


In the 1980s, medical advances in surgical procedures and immuno-suppressives led to a decrease in the likelihood that organ recipients would reject their transplanted organs.(31) Consequently, the high demand for organ transplants and the limited supply of viable organs became a growing national concern.(32) The lack of available organs led to patients, along with their families and friends, appealing to the public through the media.(33) Believing that these public pleas were "counterproductive to the needs of many others requiring organ transplantation,"(34) and attempting to increase the organ supply, the federal government decided to formulate a national organ transplantation policy.(35) Consequently, to create a system where equity prevailed in the distribution of organs for transplantation, Congress passed the National Organ Transplant Act of 1984 (NOTA).(36) NOTA required the Secretary of the Department of Health and Human Services (HHS) to establish by contract establish the Organ Procurement and Transplantation Network (OPTN), an entity responsible for organ transplantation policy.(37) In 1986, HHS transferred the OPTN contract to UNOS.(38) Some of OPTN's duties include establishing a national list of potential recipients as well as a system that matches and allocates the organs to those on the list.(39)

UNOS, as a requirement of its contract with the U.S. government, determines how to allocate nationally the few human organs available for transplant.(40) NOTA allows the Secretary of HHS to make grants for Organ Procurement Organizations (OPO) as members of UNOS.(41) An OPO coordinates the retrieval, preservation and transportation of organs and maintains a system of locating possible recipients for available organs.(42) Congress divided UNOS into eleven geographical regions and assigned an OPO to each region.(43) Each OPO focuses its procurement efforts to that particular region and maintains a local waiting list.(44) UNOS prioritizes and ranks patients on its regional and national lists according to the standards established by its policies.(45) Every UNOS decision or policy undergoes public comment.(46) Next, the HHS reviews the UNOS policies, which become law when the Secretary approves them.(47) Until this happens, all UNOS policies are voluntary and unenforceable by the OPTN.(48)

UNOS operates through its board of directors, which is composed of "33 people representing the scientific and medical communities, patients, patient family members, transplant recipient populations, donor family members, and the general public."(49) The OPTN membership, composed of transplant centers, independent organ procurement organizations, voluntary health organizations, medical and scientific organizations and the general public, elects the board of directors.(50) After receiving extensive commentary from the OPTN members, the board approves or disapproves the proposed policy. …

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