Title: The "Science Club" and Beyond: Protecting Individuals with Developmental Disabilities in Research
- Sam Shepherd
- 2 days ago
- 6 min read
Kady D’Addario Marteness, M.A., M.S.
The story of 20th-century science is often told as a tale of triumph and discovery, but behind the gleaming innovations lies a history of profound ethical failings. One of the most troubling chapters unfolded in institutions designed to care for society's most vulnerable. At the Fernald State School and the Wrentham School in Massachusetts, children with intellectual and developmental disabilities were used as test subjects in experiments that would be considered abhorrent today. These studies, conducted by researchers from MIT and Harvard, reveal a time when scientific ambition led to the exploitation of those without a voice, a grim reminder that progress without principle is a perilous path.
From 1800 to 1950, “training schools” were established with the belief that individuals with disabilities could be educated to return to the community and lead productive lives through proper education, training, and humanitarian means [3]. Massachusetts and New York pioneered these “schools,” which focused on physical training to improve motor and sensory skills, basic academics, and the development of social and self-help skills [3]. However, over time, these institutions fell away from these initial goals of educational settings into residential facilities that often became exploitative [3]. Many times, these institutions became “custodial,” meaning that the institution, or in the case of Fernald and Wrentham, the Commonwealth of Massachusetts, was acting as the parent or guardian of those in their care [2]. Without external advocates, these children were particularly susceptible to mistreatment, and in extreme cases like this one, unethical experimentation [2].
Between the 1940s and 1960s, children with conditions like Down’s Syndrome were put into the care of institutions like the Fernald and Wrentham State Schools. Their families were advised that due to their intellectual and developmental disabilities, these settings would be the safest and most beneficial place for them [5]. However, by institutionalizing the children, the schools were put in a position to “treat” their patients without their assent or parental consent [1]. Children with disabilities were historically considered “convenient and low cost” for research [5].
At Fernald, a “Science Club” was established for boys aged 10 to 17, and joining the club was incentivized with Red Sox tickets, trips, gifts, and an innocuous-sounding free breakfast. However, these breakfasts were not ordinary bowls of cereal — amid high competition with Cream of Wheat, Quaker Oats was looking to set their product apart [2]. Quaker funded experiments “for commercial reasons” to determine if a compound in oats would result in less effective absorption of iron and calcium [2], as that compound was not found in farina, the main grain ingredient in Cream of Wheat. With Quaker’s financial support and the availability of test subjects at the Fernald school, Massachusetts Institute of Technology researchers began their experiments. The boys were fed oatmeal and milk that were laced with radioactive iron and calcium tracers [2]. One test subject recalled, “We just thought we were special” [2], while their meal was spiked with radiation without their knowledge or consent [5]. In some cases, radioactive calcium was injected directly into the children’s bloodstream [2].
At this time, Quaker was not the only interested party in the research. Scientists would use the results of these experiments, which showed what happened to calcium after it entered the bloodstream (it quickly goes to the bones) and how it is excreted (mostly through urine). This research on calcium metabolism provided the groundwork for later research on osteoporosis [2]. The Atomic Energy Commission was also indirectly funding the experiments due to its interest in how calcium and iron might prevent radiation sickness or other impacts of radiation exposure in the nuclear age [2].
The immediate and long-term impacts on the individuals subjected to these experiments were devastating. These young people experienced a profound betrayal of trust, as their perceived ‘special’ status was a cruel deception [2]. For many, the “pain of abuse lingers,” fostering a “disappointed type of feeling” toward those who took advantage of their vulnerability [2]. These experiments underscore a historical pattern of marginalization and exploitation of people with developmental disabilities, who were seen as subjects rather than individuals with rights [6]. Some scientists downplayed the health risks as only slightly increasing cancer risk [2], but the fundamental violation of human rights and personal autonomy remains undeniable. The fact that these “experiments violated human rights,” despite being conducted “according to the ethical and protocol standards of their day,” highlights a severe flaw in the ethical norms of the era [5].
The public revelation of the Fernald experiments, along with other abuses like the Tuskegee syphilis study and the Willowbrook Study (where institutionalized children were intentionally infected with hepatitis) [5 and 2], sparked widespread outrage and catalyzed significant reforms. In 1974, Congress passed the National Research Act to “strengthen human research protections,” explicitly requiring specific oversight for human experimentation [2].In 1979, the Belmont Report built on the National Research Act to establish core guiding principles that guide all research on human subjects today:
Respect for Persons: Researchers must respect individual autonomy and specifically provide “equal protection” to individuals with what the report describes as “diminished autonomy.” This mandates a meaningful process of consent where the subjects fully understand and voluntarily agree to participate. For children, their dissent should be respected, even if their parent or guardian provides permission [1]
Benficence: Researchers are obligated to protect subjects from harm by maximizing potential benefits and minimizing potential risks, and both of these must be clearly disclosed to subjects before they agree to participate [1]
Justice: The risks and benefits of the research must be equally distributed among subject populations, preventing the exploitation of vulnerable groups [1]
In 1993, the declassification of documents from the Atomic Energy Commission and investigative reporting brought these hidden histories to light [2]. This led to a public recognition of the Fernald experiments and a formal apology from President Clinton.
In addition to these steps, higher educational institutions have recognized and worked to rectify past harms. Harvard Law School established a Project on Disability (HPOD), intending to integrate persons with intellectual disabilities into an active role in university life [4]. These actions include inviting individuals with intellectual disabilities to co-teach classes, challenging historical exclusion, and empowering these individuals to define their own narratives and contribute meaningfully to the academic environment [4].
The goal of Harvard Law School’s Project on Disability is to prepare future leaders – in medicine, public health, law, and other fields - to understand better, serve, and advocate for this historically margainalized population, ensuring that the lessons from the “Science Club” and other historical mistakes are never forgotten, and the rights of all individuals are upheld [4].
The events at the Fernald and Wrentham State Schools are not just a footnote in history; they are a stark reminder of the ethical failures that can occur when the pursuit of knowledge eclipses human dignity. The reforms that followed—from the National Research Act to the Belmont Report—were a direct response to these abuses, establishing a crucial foundation for protecting individuals in research. Yet, the work is far from over. The ongoing efforts of institutions like Harvard's Project on Disability to include and empower individuals with disabilities in their own narratives demonstrate that truly learning from the past means actively shaping a more just and equitable future. Ultimately, the lesson of Fernald is a call to continuous action: to remember that the rights of all people, especially the most vulnerable, must be fiercely and consistently protected.
Citations:
1. The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research.
U.S. Department of Health and Human Services.
2. Boissoneault, L. (2017, March 8). A Spoonful of Sugar Helps the Radioactive Oatmeal Go Down.
Smithsonian Magazine.
wn-180962424/
3. "Parallels in Time: A History of Developmental Disabilities." The Minnesota Governor's Council on
Developmental Disabilities, mn.gov/mnddc/parallels/. Accessed 14 Sept. 2025.
4. Smith, H. (2024, June 6). Visibilizing Intellectual Disability in the Classroom. Harvard Law School Project
On Disability. Retrieved September 14, 2025, from https://hpod.law.harvard.edu/news/entry/intellectual-disability-classroom
5. West, Doe. "Radiation Experiments on Children at the Fernald and Wrentham Schools: Lessons for
Protocols in Human Subject Research." Accountability in Research, 1998,
https://doi.org/10.1080/08989629808573922. Accessed 14 Sept. 2025.
6. Wright, A. L. (1994, February 2). New Details Emerge in Case of Tests on Human Subjects. The Harvard