Would an Organ Transplant be Denied for My Daughter?

My daughter was born with a small hole in her heart. Such abnormalities are common in babies with Down syndrome, and we were lucky that her heart quickly repaired itself as she grew. Now as a third-grader, she rides her bike in our neighborhood on Saturday mornings, and she plays tag with her friends at recess. During those early days of her life as we faced an unexpected future, I could not have imagined what a life force my daughter would become. She takes violin lessons, enjoys reading, and is learning her multiplication facts, all thanks to teachers who have put aside any assumptions they might have had about what people with Down syndrome are capable of.

Yet, if my daughter’s heart had not healed when she was a baby, she could have been refused an organ transplant based on her intellectual disability. Currently, only 26 states have laws in place that explicitly prohibit this discrimination. Despite federal protections such as the Americans With Disabilities Act, there remains an alarming rift between what the law requires and what medical professionals practice. In a study from 2008, 85 percent of organ transplant centers surveyed considered disability when deciding if a patient should be on an organ transplant list. Forty-four percent of centers said they would deny an organ transplant to a child with some level of neurodevelopmental disability.

n February, Reps. Jaime Herrera Beutler, R-Washington, and Katie Porter, D-California, introduced the Charlotte Woodward Organ Transplant Discrimination Prevention Act (H.R. 1235), federal legislation that would end the common practice of denying people with intellectual disabilities lifesaving organ transplants. The Charlotte Woodward Act would affirm that having an intellectual disability is not synonymous with a low quality of life or a life less worth living. It would also serve as a much-needed guardrail against the persistent discrimination that has accompanied the IQ test since its development. The test helps my daughter’s teachers understand how she learns best and qualifies her for certain forms of social support. But it also exposes her to a lifetime of judgment and preexisting determinations.

There might be no better way to understand how “intelligence” became a requirement for organ transplants than to look at the IQ test’s history. The evaluation of intellectual functioning has been determined by an IQ test since the early 20th century. French psychologists Alfred Binet and Théodore Simon designed the first intelligence test in 1905 to identify children whose poor performance indicated a need for more help. Binet’s test consisted of a series of short tasks that related to basic expectations for comprehension and reasoning. Children were asked to label parts of the body, to describe the difference between a fly and a butterfly, and to use scissors to cut a specified shape out of a piece of paper. Binet sequenced the tasks according to their difficulty, and a child proceeded through the exam until she could no longer complete the tasks. The age associated with the last task she could perform was her assigned “mental age.” This number was divided by the child’s chronological age to arrive at her intelligence quotient, or IQ.  In versions of the IQ test now supported by the American Psychology Association, IQ is a complex composite determined by a series of subtests and standard deviations. My daughter takes an IQ test every three years.

Although Binet intended for his original test to enhance the potential of all children, it didn’t take long for the test to become a shorthand for human worth. In the 1910s, Henry Goddard, director of the department of psychological research of the New Jersey Training School for Feeble-Minded Boys and Girls, popularized the use of IQ tests in American schools. Goddard reported in 1913 that 15,000 (or about 2 percent) of pupils in the New York school system were “feeble-minded,” which meant they had a score less than 70 on the test. Goddard presented this fact as though pointing to an infestation. The New York Times article from Feb. 8, 1913, that reported Goddard’s study to the public suggested two solutions to this perceived crisis: permanent segregation of classrooms and the surgical sterilization of feeble-minded adults. Goddard touted eugenics as the solution to the nation’s perceived intelligence problem. Due to cultural bias in the language and presentation of IQ test materials, it became a way to “prove” the inferior intelligence of Black people and immigrants. With the evidence provided by the IQ test, disability and difference more generally could be identified, and eventually institutionalized. To promote a more precise and systematic identification of what needed to be removed, Goddard proposed a three-tiered classificatory system: A moron’s IQ was 51 to 70, an imbecile’s IQ was 26 to 50, and an idiot’s IQ was less than 25. Goddard’s proposed cure to the nation’s feeble-mindedness was widely implemented. Students with low IQs were isolated in separate and often deplorable learning environments, and Goddard’s studies were introduced as evidence in the 1927 Supreme Court case that legalized involuntary sterilization.

As Goddard’s terms evolved into colloquial insults, psychology disowned them; “intellectual disability” is now used as a more respectful term. Yet the biased logic that produced these labels remained part of our culture. A survey conducted in 1993 by researchers at Virginia Commonwealth University found that Goddard’s classificatory system was still used to evaluate the eligibility of a candidate for medical care. Of the 411 transplant centers surveyed, one-fourth indicated that patients with IQs between 50 and 70 would be considered ineligible to receive a heart transplant. Three of every 4 centers indicated that they considered patients with an IQ under 50 ineligible for an organ transplant. The scores of people with Down syndrome range widely, usually between 30 and 70, and are based on a combination between genes, social upbringing, and culture. Nonetheless, the bias revealed in this study effectively prevented anyone with Down syndrome from receiving an organ transplant; there were simply no instances of it happening on record.

Things started to change in 1995. That year, Sandra Jensen, a 34-year-old woman with Down syndrome and a terminal heart condition, was denied treatment by two organ transplant centers in California. The first hospital refused her request without meeting or examining her, stating that patients with intellectual disabilities were categorically ineligible for organ transplants. The second hospital concluded that a person with Down syndrome would be unable to follow the postoperative care that would be required of her, not taking into account that Jensen lived independently, and was an active disability rights advocate and organizer. One of the hospitals eventually relented to public pressure, and Jensen became the first person with Down syndrome to receive an organ transplant. Following Jensen’s operation, California became the first state to pass legislation prohibiting organ transplant discrimination.

For many years, it was the only state to explicitly prohibit this kind of discrimination, though New Jersey followed in 2013, along with a flurry of other states in recent years, including 10 so far in 2021. Currently, there is legislation pending in three more states that will ban doctors from deciding who receives a transplant based on IQ. These laws will have a concrete positive effect on many people’s lives. But this piecemeal process is squandering the opportunity for a national statement about the value of the lives of people with intellectual disabilities. Passing the Charlotte Woodward Act would not just help prevent discrimination in this one area of medical care; it would also mark a historic change in how Americans think about and value intelligence.

Progress is so slow because Goddard’s conception of intelligence runs deep. Health care providers often assume that someone with an intellectual disability would be unable to manage postoperative care, which might involve sticking to a strict schedule for taking medication and appointments for bloodwork. In 2016, the International Society for Heart and Lung Transplantation updated its listing criteria to incorporate new testing technologies and research, yet the new guidelines still discourage heart transplants in patients with intellectual disabilities, citing the potential for self-injurious behavior and the “inability to ever understand or cooperate with medical care.” The assumption is strange: People with intellectual disabilities are going to college, maintaining full-time jobs, and participating in decisions that affect their lives. In fact, a 2012 paper following five cases found that medical adherence rates of people with intellectual disabilities are comparable to the general population.

It is true that people with intellectual disabilities might need support from family, friends, and health care workers to manage postoperative care, which is an important part of a successful transplant. A more modern understanding of intelligence is the best lens through which to view these facts. In an article published in 2011, the psychologist Robert Schalock noted that intelligence has evolved from the identification of something perceived as fixed and stable—identifiable with a one-off IQ test that determines a child’s fate—to a focus on “intellectual functioning,” a back and forth between an individual and the environment. In other words, intelligence can be perceived as how well a person is interacting and functioning within a certain context. That is, the responsibility to function is not entirely on a person with an intellectual disability. The burden should be on the cultural and social context too, to provide access to tools as needed. While intelligence implies superior independence and self-sufficiency, intellectual functioning values dependence and social connections. In fact, none of us are purely and intellectually able to care for ourselves alone after a major medical procedure. We’re all reliant on the guidance and care of nurses and delivery of meals from friends and family to set us up for success.

While I can’t overlook the test’s history, I already see how this new understanding of intelligence has shaped my daughter’s life. In the context of intellectual functioning, the test is a way to help enhance her capabilities, rather than a sentence dictating her quality of life. Her teachers and therapists turn to the IQ test to identify which tasks she might need assistance with, and what concepts might take her more time to grasp. But the test does not overshadow their relationship with this vivacious little person. The IQ test can determine what help she needs to be fully included and have access to as many opportunities as possible. Legislation prohibiting organ transplant discrimination based on IQ would affirm that it should be used similarly by health care providers: not as a means to deny care, but a tool to figure out how to best deliver it.