Unethical Study Explained: Attend Less, Fear More: Elevated Distress to Social Threat in Toddlers With Autism Spectrum Disorder
Everyone can agree that medical studies are necessary to keep society healthy. There is a fine line on the necessity of a study and exploiting disabled babies. Yes, disabled babies. According to Eric Yan of Harvard medical school, research including developmentally disabled children and adults have contributed greatly for improvements in quality of life but also remembered for major ethics violations. Closer examination of existing codes with respect to developmentally disabled people is because of the past violations that have occurred.
This study is frighteningly similar to the Little Albert Experiment
Little Albert was a nine month old infant that was experimented on. They wanted to see his reaction to different stimuli. He was shown a white rat, a rabbit, a money and various masks. Albert showed no fear to any of these stimuli. He was startled when a hammer was striking a steel bar behind his head. When he heard the sudden loud noise, he would cry.
When Albert was eleven months old, the white rat was presented then a few seconds later the hammer hit the steel bar. This was repeated seven times. Every time Albert cried. He tried to crawl away. This caused Albert to be afraid of the rat. Watson and Rayner noticed that Albert was also afraid of objects that shared characteristics with the rat. Some examples were the family dog, a fur coat, cotton wool and a father Christmas mask. This is called generalization.
Watson and Rayner showed classical conditioning could incite fear. It was a phobia because it was an irrational fear. The next few weeks and months, Albert was observed and 10 days after conditioning his fear was less marked. This dying out of a conditioned response is called extinction. After a month, he was still afraid but the response wasn't as severe.
The Study in Question
At Yale University, both autistic and neurotypical toddlers were being subjected to stimuli to trigger a fear response. The purpose of this study was to show a link between exposure to a social threat and distress level in an autistic toddler. The study will be broken down and explained in order for the average person to understand what happened during this study. Their reason for their study is that young autistic children exhibit "atypical reactivity to every day challenges." This means they react differently to stimuli that trigger them emotionally. Some challenges that the study staff consider to be every day but can be more stressful for the autistic person. In order to pathologize autism, the study doctors have the desire to witness babies in distress.
Who Approved this Study
This study was approved by the Human Investigation Committee of the Yale School of Medicine and informed written consent was obtained from the parents of the participants. The participants were 42 autistic toddlers (average age of 22.42 months) and 22 typical toddlers (average age of 22.97 months) without a family history of autism.
Who Participated in the Study
The typical toddlers were the control group. The autistic toddlers were referred to a university clinic to confirm an autism diagnosis. The participants were assessed using the Mullen Scales of Early Learning (MSEL) and "severity of autism symptoms (their words not mine)" using the Autism Diagnostic Observation Schedule- 2 (ADOS-2) toddler model. There was a child psychologist, a social worker, and a speech language pathologist assigned to carry out the assessments. Toddlers who had known genetic abnormalities or gestational age under 34 weeks (born before the pregnancy was 34 weeks long) were excluded. 26% of the participants were female.
Study Procedure
- female stranger wearing dark clothing, a hat and sunglasses entering the room approaching the child and leaning towards the child for approximately 3 seconds one time
- a large mechanical spider crawling towards the child 3 times
- a mechanical dinosaur with red light up eyes approaching the child 3 times.
- female stranger with dark clothes wearing 3 grotesque masks one right after another while entering the room briefly and maintaining a 1.5 meter distance from the child
Ethical Principles when Involving Developmentally Disabled People in Research
Principle of Validity
Principle of Distributive Justice
- something that happened to a child
- something that happened close to the child
- something the child saw
Principle of Beneficence and Nonmaleficence
- not greater than minimal risk/direct benefit
- not greater than minimal risk/no direct benefit
- greater than minimal risk/direct benefit
- greater than minimal risk/no direct benefit
Principle of Autonomy
Response from Yale after Outrage
Sources:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3124381/
https://drive.google.com/file/d/1kqiekRj0tGJSorzxmT-xelnMYOumFIk6/view
https://www.friendshipcircle.org/blog/2013/07/12/post-traumatic-stress-disorder-in-babies-and-toddlers-what-are-the-symptoms/
https://medicine.yale.edu/news-article/29344/
Terrifying. Just terrifying.
ReplyDeleteEmily Willingham wrote about this study too.