The Science Club: The US Government’s Failure to its Most Vulnerable Citizens

Maya Rubin

In the 1940s scientists at the Massachusetts Institute of Technology decided to conduct research about the body’s absorbency of important vitamins, and the test subjects they chose were 40 students from Massachusetts School for the Feeble-Minded (later renamed the Fernald State School) in Waltham. The children involved were told they were joining a special group called “The Science Club.” A letter of consent was sent to some of the parents of those in the study, but only mentioned that the experimentation would be centered around “how the body absorbs various cereals, irons, and vitamins.” It failed to mention that trace amounts of radioactive calcium would be in the food served to the children.[1] Though the radioactive ingredients’ purpose was to allow the scientists to trace the nutrients as they absorbed into the body, and the amount of exposure for The Science Club members was only somewhat more than the exposure of a mammogram, the health of these children could have been seriously at risk.[2] Following the experiment, the children grew up and left, not knowing that they had ingested radioactive food in their time in the Science Club at Fernald. The inherent dangers of the experiment and the fact that the institution capitalized on preexisting vulnerabilities demonstrates Fernald’s massive failure in taking responsibilities for the children in its care. However, the public outrage, further investigation and reparations perhaps indicates changing societal attitudes towards the disabled community in the United States.

Despite the students’ lacks of thought about the Science Club following their time in Fernald, there were significant short and long term effects. Throughout the few years of being in the study, many students reported feeling “privileged” and “special,” unusual feelings for students at Fernald.[3] Mr. Charles Dyer reported that he was given “a Mickey Mouse watch, and they made me feel special.”[4] Students rarely got to leave campus and did not own possessions other than basic clothing and supplies. Therefore, when the Science Club overseers promised trips and toys, the students felt a strong feeling of pride. Also, when the superiors classified the boys in the Science Club as “brighter,” they validated many of the boys’ beliefs that they were not meant to be at Fernald. However, later in life, the boys began dealing with some of the negative consequences the experimentation. Physically, the radiation exposure did not cause consistent ailments in all members of the Science Club, but Mr. LaRocque and Mr. Dyer were two of the students who did see medical repercussions that potentially related to the study. Mr. LaRocque had “medical problems in their stomach, digestive system,” while Mr. Dyer had lost one child, and another of his children was born with internal organs reversed.[5] Emotionally, all the men had to cope with the fact that they were used as test subjects in harmful research, without their informed consent, by the people who were supposed to look after them. In a statement responding to questions about the emotional impact of the Science Club, Mr. LaRocque explained that his participation “weighs on [him].” However, the future emotional state of the children was set aside to provide “scientific research [where] once you learned what the impact was upon [the] children, it could be used to benefit others.”[6] Though the study provided the children with attention and validation in the short term, in the long term participating in the Science Club caused physical and emotional effects that lasted the rest of the participants’ lives.

Other than the concerns to the children’s wellbeing, a major concern is the question of their consensual participation in the experiment. Given the lack of consent from the families and students, the Science Club demonstrates a huge failure of the overseers of Fernald to protect their students from being taken advantage of. However, at the time of the experimentation there were no official policies in place condemning human experimentation without explicit consent. In the later Senate investigation of the research done at Fernald, Dr. Belton Burrows, who defended the institution, discussed this difference in legislation saying, “there was no formal process to document the patient’s knowledge of, and consent for studies. There was [only] the established practice to verbally explain what was being done and why.”[7] Dr. Bellows went on to explain, that therefore the institutions involved could not be held to the level of ethics that was only established years after the experimentation had finished. It wasn’t until four years after the Science Club, in 1953, that the National Institute of Health created the Clinical Center Human Subject Policy requiring informed consent for patient studies.[8] Then in 1974, the National Research Act instituted guidelines for ethical research and that official review was needed to certify that those involved in the study had informed consent. However, as Representative Markey explains as part of the later investigation: “Radiation and its health effects were widely discussed in the era of bomb shelters and air raid drills. Moreover, the Nuremberg Code was in effect…[with] established guidelines on obtaining informed consent for experiments.”[9] The letter that acted as a consent form for participation in the Science Club failed to take these ideas into account. Not only did the letter not mention the use of radiation (and those side effects that accompany it), the letter explicitly mislead parents by emphasizing the potential “rewards” of participating in the study, thus encouraging those parents to give their consent. The participants who lacked parents to sign the consent form had to sign for themselves, even in cases where they couldn’t read the contents. Austin LaRocque, a member of the Science Club said, “at that particular time [he] could not read or write [and] had no knowledge of anything other than the fact that [he should] do what [he was] told.”[10] While the Fernald School did not have an official legal obligation to make sure that the students in the Science Club understood the dangers of participation in the study, its role in its caring for vulnerable students implied a moral obligation to get informed consent. By failing to do so, Fernald failed to fulfill its responsibility toward its students.

The experiments conducted at Fernald were not widely known until the early 1990s, and when they were discovered, the news sparked a conversation throughout the United States regarding institutions’ obligations to the students in their care. Beginning with an official investigation, the country set about making right prior negligence toward disabled citizens. The Science Club experiments were publicized when, in 1993, a Boston Globe journalist published an article explaining how MIT and Quaker had sponsored a study that used radiation on patients in the Fernald School.[11] The outrage that followed demonstrated the clear change in public opinion regarding those previously considered “undesirable” by the society in which they lived. Once the article was published, the government began a series of Senate hearings that looked into human experimentation at Fernald. In the hearings, Edward M. Kennedy, the chairman of the hearings, challenged the representative of the Fernald Center on its lack of responsibility towards those in its custodial care. When the representative of Fernald resisted the accusations of blame, the Chairman reacted with disgust saying:

Aren’t you appalled…that the most vulnerable people in our society, which were young people, 7, 8, years old, that are in an institution, aren’t you appalled that they were the ones selected? Aren’t you appalled that there was not follow up in terms of medical kind of caring in terms of treatment and notification, even after we have gone through all of these kinds of changed atmosphere, in terms of informed consent…in terms of the circumstances which were raised about this, looking back at it then and looking forward to where we are now.[12]

The Chairman, here, asserted that the fact that the people in the Science Club were the “most vulnerable” members of society, and that they were still chosen for experimentation demonstrated the lack of respect and responsibility the institution felt for them. He also mentioned a “changed atmosphere,” and that despite all the progress that had been made, the clear need for continued improvement in the future. Given the severity of the claims against Fernald and other institutions, President Bill Clinton also created a special committee (called the Advisory Committee on Human Radiation Experiments) to help investigate all radiation experiments on human subjects. During this time many newspapers sent out ads requesting that those people who had been part of the Science Club should step forward to be part of a class action suit against MIT, Fernald, and Quaker. In the end MIT, Quaker, and the government settled and paid the thirty people who brought the lawsuit $1.85 million.[13] The public indignation, complete official investigations, and reparations to participants potentially demonstrated a major change in society’s feeling of accountability towards its most vulnerable citizens.

Despite the major improvements in the respect given towards those with disabilities, many participants from the Science Club still felt that Fernald had so utterly failed at its responsibility to take care of them, that no amount of money could bring back the time they lost or the treatment they received. Freddie Boyce, one of the participants in the Science Club, said later in life that he never got “what he really wanted: an apology” from Fernald for the way it treated him.[14] Boyce’s friend, Joey Almeida, felt similarly, “I always felt that they owed me, because they took the most important thing of my life away…my childhood and my education. The two things you need in life to make it, they took from me.”[15] While the government and the larger society have both since reformed their positions on the respect and special care required for the disabled community in the United States, there are still major improvements that need to be made to protect the many vulnerable citizens. The only question is which people of the future will bear the same emotional scars from their current treatment as those who were labeled “morons” just a few decades ago.

Bibliography

Allen, Scott. "Globe_Fernald." Globe_Fernald. December 26, 1993. Accessed November 20, 2016. http://faculty.uml.edu/darcus/47.269/MATERIALS/fernale_globe1993.htm.
Crockett, Zachary. "The Dark Secret of the MIT Science Club for Children." Priceonomics. February 26, 2015. Accessed November 20, 2016. https://priceonomics.com/the-mit-science-club-for-disabled-children/.
U.S. Congress. Senate. Committee on Energy and Commerce. American Nuclear Guinea Pigs: Three Decades of Radiation Experimentts on U.S. Citizens. 99th Cong., 2nd sess., November 1986-1987
Hussain, Zareena. "MIT to Pay Victims $1.85 Million in Fernald Radiation Settlement." MIT to Pay Victims $1.85 Million in Fernald Radiation Settlement - The Tech. January 7, 1998. Accessed November 20, 2016. http://tech.mit.edu/V117/N65/bfernald.65n.html.
U.S. Congress. Senate. Committee on Labor and Human Resources. Human Subjects Research: Radiation Experimentation. 103rd Cong., 1st sess., January 13, 1994.
Leung, Rebecca. "America's Deep, Dark Secret." CBSNews. April 29, 2004. Accessed November 20, 2016. http://www.cbsnews.com/news/americas-deep-dark-secret/.
Medical Board of the Clinical Center. "L'lEDICAL L.GARD JJOClJ}.fENT NO. L - NIH History Office." National Institute for Health, n.d. Web. 20 Nov. 2016.

[1] https://priceonomics.com/the-mit-science-club-for-disabled-children/

[2] https://priceonomics.com/the-mit-science-club-for-disabled-children/

[3] U.S. Congress, Senate, Committee on Labor and Human Resources, Human Subjects Research: Radiation Experimentation, 103rd Cong., 1st sess., 1994, 40 https://archive.org/stream/humansubjectsres00unit#page/39/mode/2up/search/special

[4] Zachary Crockett, “The Deep Secret of the MIT Science Club for Children,” Priceonomics, (2015) https://priceonomics.com/the-mit-science-club-for-disabled-children/

[5] U.S. Congress, Senate, Committee, Human Subjects Research, 5 https://archive.org/stream/humansubjectsres00unit#page/5/mode/2up

[6] ibid.

[7] ibid

[8] Medical Board of the Clinical Center, Clinical Center Human Subjects, National Institute of Health, 1953, https://history.nih.gov/research/downloads/NIH1953humansubjectpolicy.pdf (accessed November 20, 2016)

[9] U.S. Congress, Senate, Committee on Energy and Commerce, American Nuclear Guinea Pigs: Three Decades of Radiation Experiments on U.S. Citizens, 99th Cong., 2nd sess., 1986 http://nsarchive.gwu.edu/radiation/dir/mstreet/commeet/meet1/brief1/br1n.txt

[10] U.S. Congress, Senate, Committee, Human Subjects Research, 23 https://archive.org/stream/humansubjectsres00unit#page/23/mode/2up

[11] Scott Allen, “Radiation used on Retarded: Postwar Experiments Done at Fernald School,” Boston Globe, 1993 http://faculty.uml.edu/darcus/47.269/MATERIALS/fernale_globe1993.htm

[12] U.S. Congress, Senate, Committee, Human Subjects Research, 19 https://archive.org/stream/humansubjectsres00unit#page/19/mode/2up

[13] Zareena Hussain, “MIT to Pay Victims $1.85 Million in Fernald Radiation Settlement,” The Tech, 117, no. 65, (1998). http://tech.mit.edu/V117/N65/bfernald.65n.html

[14] Rebecca Leung, “America’s Deep, Dark Secret,” CBS News, (2004) http://www.cbsnews.com/news/americas-deep-dark-secret/

[15] ibid