The Ethical Implications of the “Monster Study”

The diagnosogenic theory for the onset of stuttering, initially proposed by Wendell Johnson in the early 1940s, suggests that a child’s speech disorder lies not in biology, but in learned behaviour. Stuttering, he claimed, “begins not in the child’s mouth but in the parent’s ear.”1 The idea was powerful and provocative, and had huge implications for speech therapy.

To validate his thesis, Johnson recruited his student Mary Tudor in 1938 to undertake an experiment from January to May 1939 that would examine the impact of verbal labelling on the frequency of disfluency in stuttering and non-stuttering children at the Soldiers and Sailors Orphans’ Home in Davenport, Iowa. This experiment, now dubbed the “Monster Study”, would become the subject of a multimillion-dollar lawsuit against the State of Iowa and the University of Iowa. Decades later, we can only begin to understand what the study tells us about speech disorders, as well as the ethics of conducting scientific research, the exploitation of vulnerable groups and the egos of driven men.

The protocol was simple: the orphans, ranging in age from 5 to 15, were divided into two groups of 11, with one group labelled normal speakers and given positive speech therapy, while the other group was induced to stutter. None were informed of the intent of Tudor’s study. By the end of the study, results showed that Group IIA, a group of normally fluent orphans who were treated as stutterers and told their speech is poor, began to act like stutterers - they whispered, shuffled their feet, gulped and clamped their mouths shut. There was also “a tendency for them to become less talkative.”[2] These unpleasant behavioural changes ultimately interfered with their verbal communication and social skills, with some effects lasting a lifetime. 

According to the principle of autonomy, which states that individuals have the right to make voluntary informed decisions, Wendell and Tudor should have fully informed the human subjects about their research.[3] Instead, they knowingly chose to perform the study at an orphanage, where parental consent is not required or even possible to obtain, and provided false information to orphanage staff regarding the true objectives of the study. This violates the basic right of patients to information regarding their health, as stated in multiple guidelines for ethical research - including the Nuremberg Code, which was developed at the time the study took place and emphasises the importance of obtaining voluntary consent from human subjects. 

Moreover, it is morally troubling for the personal information, including name, age and IQ score, of nine participants to be released. According to the Health Insurance Portability and Accountability Act (HIPAA), confidentiality should always be protected and a minimal amount of information should be disclosed to ensure the privacy of patients. The young participants were oblivious to how their identifiable private information would be handled, managed and disseminated. Regardless of whether the thesis was published or not, one’s confidential information should not be released without their prior consent. 

While it could be argued that there were potential benefits for stutterers who received positive speech therapy as some participants’ conditions improved, this does not outweigh the severe risks that were placed on those who underwent negative therapy. The principles of beneficence, to provide benefits and take positive steps to prevent or remove harm from patients, and non-maleficence, to not intentionally create harm to the patient through commission or omission, highlight the importance of prioritising subjects’ health, safety and wellbeing.[3] Tudor and Johnson had little regard for the negative impacts of the study on its participants as the procedures they employed involved belittling the young participants - whether they were real stutterers or not - by endorsing the label “stutterer” and telling them to stop speaking until they could do so correctly. A beneficent researcher would ensure that subjects benefit both from the process and results of the study; it is clear that the participants suffered from lasting social and emotional impacts at the hands of the investigators. 

It is crucial to view the study in the context of its time. Strict regulations on researching human subjects did not exist, and other investigators at the University of Iowa would conduct similar studies using gunshot noise to study the effect of startle on stuttering.[4] The experiment was also hardly unique in having used orphans as subjects. “Today, we might disagree with what he did, but in those days it was fully within the norms of the time,” said Duane Spriestersbach, a colleague of Johnson who later became a professor of speech pathology at the University of Iowa.[5] However, it was a particularly sensitive time - in the aftermath of World War II, Johnson did not publish the results of the study as he feared others would draw comparisons to the horrific Nazi experiments on human subjects, which would destroy his career. Yet the thesis, with the results of the Monster Study, was available at the University of Iowa library and was checked out by a number of researchers during the decades it was there.[6]

According to Dave Williams, a professor emeritus of communicative disorders who studied under Johnson after the war, “it was a very conflictive situation for him. He didn’t know how to react to it or handle it.”[7] The experiment provided direct evidence for his theory, could help millions of children worldwide and would undoubtedly elevate his status in the field of speech pathology - yet he would risk being ostracised. This raises the complicated question of whether medical ethics are absolute or relative - it is clear that such a project would be considered wrong under modern standards of the scientific community, but is it acceptable in the context it was conducted? Just because something is common, does not mean it is correct. 

Additionally, understanding one’s intention is critical in judging the ethics of those involved in conducting the study. The principle of nonmaleficence clearly states that one must not deliberately inflict a negative act or effect on another; did Johnson and Tudor intentionally cause harm by turning normally speaking children into stuttering children, or to worsen the stutter in children who already do? Johnson first circulated a pamphlet in 1934 stating the cause of stuttering is organic; the diagnosogenic theory was then brought up in 1942 and officially published almost 20 years after the study was completed.[8] Some critics therefore argue that his theory was still in its infancy when the study was planned, and that the potential harmful effects of listener reactions on stuttering were not fully understood. Others contend that because the study was designed to answer the questions “will endorsement of the label “stutterer” previously applied to an individual have any affect on his speech fluency?” and “will labelling a person, previously regarded as a normal speaker, a “stutterer” have any effect on his speech fluency?”, it inherently had bad intentions as the researchers were looking for confirmation that the label “stutterer” would result in poorer speech.9 Regardless of whether Johnson’s theory was in its formative stage or not, it is undoubtedly morally incorrect to subject participants to an intervention that had substantial risks and no foreseeable benefits.

The final key principle of bioethics is justice, which states that all benefits an individual is entitled to should be given to them, and that no burdens are unduly imposed upon them.3 Justice can also be described as ensuring that the benefits outweigh the burdens and risks of participating in the study. The use of orphaned children in this study is clearly exploitative of a vulnerable population who are often disadvantaged and neglected within society, and as aforementioned, the risks of the methods employed vastly outweigh the benefits. Some argue that the study undoubtedly produced strong evidence for the theory and opened doors to new effective therapies, thereby helping countless children in decades that followed. However, the means does not always justify the end - subjecting young orphans to experimentation that they did not know about or consent to, is inexcusable.

While the experiment should never be repeated, it also should not be ignored. To this day, The Monster Study is the most direct evidence of the diagnosogenic theory, and underlies the popular contemporary view that positive reinforcement is the best therapy for children with speech disorders. Ultimately, it serves an important lesson about the importance of transparency and consent in human experimentation, and reminds all investigators to conduct research with the four principles of bioethics in consideration.  

References

1. Reynolds G. The Stuttering Doctor’s ‘Monster Study [Internet]. The New York Times; 2003 [cited 2024 Apr 10]. Available from: 

https://www.nytimes.com/2003/03/16/magazine/the-stuttering-doctor-s-monster-study.html 

2. Tudor M. An Experimental Study of the Effect of Evaluative Labeling of Speech Fluency. 1939; doi:10.17077/etd.9z91xfgn

3. Beauchamp TL, Childress JF. Principles of Biomedical Ethics. Journal of Medical Ethics. 1979;28(5). doi:10.1136/jme.28.5.332-a

4. Paden EP, Yairi E, Ambrose NG. Early childhood stuttering II. Journal of Speech, Language, and Hearing Research. 1999 Oct;42(5):1113-24. doi:10.1044/jslhr.4205.1113

5. The Washington Post. Experiment Taught Orphans to Stutter [Internet]. 2001. Available from: https://www.washingtonpost.com/archive/politics/2001/06/11/experiment-taught-orphans-to-stutter/79343ece-01fb-4c80-903c-a720790ed43d/

6. Silverman FH. The ‘monster’ study. Journal of Fluency Disorders. 1988 Jun;13(3):255-31. doi:10.1016/0094-730x(88)90049-6

7. MacRae M. The Monster Study: How Doctors Tortured Orphans in the Name of Medicine [Internet]. 2022. Available from: https:// cvltnation.com/the-monster-study-how-doctors-tortured-orphans-in-the-name-of-medicine/

8. Johnson W. The onset of stuttering: Research findings and implications. Journal of the American Medical Association. 1959 Dec 12;171(15):2150. doi:10.1001/jama.1959.03010330112027

9. Ambrose NG, Yairi E. The Tudor study. American Journal of Speech-Language Pathology. 2002 May;11(2):190-203. doi:10.1044/1058-0360(2002/018)