The case of genie, a child who lived in conditions of isolation and neglect for 11 years:

• Unit 3: Introduction
• Case 1: Face-Off: Cosmetic Treatment or Damaging Experiment?
• Case 2: The Pernkopf Atlas: The Dilemma of Tainted Data
• Case 3: Atomic Testing at Bikini Island: Innocent Bystander Islanders and Soldiers
• Case 4: Genie, The Wild Child: Research or Exploitation?
• Case 5: Walter Reed's Yellow Fever Studies: Roots of Informed Consent
• Case 6: Risky Business: Treating the Potential for Diseases
• Case 7: Untreated Syphilis: Mistreated Men
• Case 8: Placebos and Placebo Effects
• Timeline: Significant Events in Human Subjects Research

Case 4 Genie, The Wild Child Research or Exploitation?

Genie, her nearly blind mother, and her elderly grandmother disturbed the social worker. The three had come into the Social Welfare office in Temple City, California, to learn about resources for the blind. The date was November 1970. The social worker noticed that the "small withered girl" had "a halting gait" and "hands held up as though resting on an invisible rail," which gave her a curious, unnaturally stooped posture. The girl was so tiny that the social worker estimated she might be six or seven years old. She suspected the child might be autistic. But Genie was actually thirteen and had been in solitary confinement since she was two years old. Her 'jailer' was her father.

In the next few weeks, Genie's story came to light, and, shortly after it did, Genie's father killed himself. The father had locked Genie up to protect her from what he considered the dangers of the outside world. During those 11 years, Genie was harnessed naked all day long to a toddler's potty seat. At night, with her arms restrained, she slept in a sleeping bag inside a "crib-cage" made of wire and wood. Whenever Genie made noise, her father would bark like a ferocious dog or beat her.

Genie ate baby food, cereals, and soft-boiled eggs, all of which were fed to her. Her 'toys' were cottage cheese containers, two plastic raincoats, threadless spools of thread, and copies of TV Guide stripped of illustrations. Her bedroom walls were bare. She had no books, no radio, no television. The only words addressed to her were angry ones. She could say "stopit," "nomore," "no," and a few other negative words. At age 13, she understood only 20 words.

Genie's father also kept his wife and son, who was a few years older than Genie, captive. He rarely permitted them to speak or to go outside. Sometimes, he sat all day with a loaded shotgun in his lap.

Through a cracked-open window in her room, Genie may have heard airplanes overhead or faint piano music drifting from a neighbor's house. Two inches of sky and the side of a neighbor's house were all that she could see through the top of the covered glass.

When Genie emerged from her prison of silence, she was, ironically, thrust into the center of a war about words. Psychologists, psychiatrists, linguists, and others had, over the years, posed a tangle of questions about how people learn to speak, how they build their vocabularies, and how they create meaningful sentences to communicate with others. Do people learn language from their environment or are they born with an innate ability to speak? Can people learn a language at any time in their lives or must they learn to speak when they are young?

Genie seemed to present them with a "natural experiment" for answering these questions, because she had heard almost no words in her thirteen years. When Genie's story spread in the academic community, many researchers were eager to study her. "From being a totally neglected waif ? Genie had become a prize. There was a contest about who was going to investigate her, and how-about where to go with the treatment and research."

At first, Genie was placed in Children's Hospital. Then she moved to the home of Jeanne Butler, one of the hospital's rehabilitation therapists. Her improvement was striking and her comfort in Butler's home was obvious. But Butler's application to become Genie's foster parent was denied by the Department of Public Social Services, which referred to a hospital policy that prohibited placement of patients in the homes of people who worked at the hospital. Thus, it was not clear why Genie was then moved to the home of Dr. David Rigler and his wife Marilyn, because Rigler also worked at Children's Hospital. Butler charged that Genie was taken from her because, in trying to provide Genie with a reasonable home life, she had alienated the researchers, who were exploiting Genie and turning her into a human guinea pig through daily testing.

Genie lived with the Riglers and their three children for four years. The transition was difficult. At first, she misbehaved, using the whole house as her bathroom, and she had many self-destructive tantrums. But, within a few weeks, Genie settled in and seemed to enjoy life with the family. She heard music, had "siblings," went to speech therapy, studied sign language, learned to sew, iron, and draw.

David and Marilyn Rigler benefited financially and professionally from the arrangement. David received a large grant from the National Institutes of Mental Health to carry out language studies on Genie, and, because he was working with Genie, he was released from certain duties at Children's Hospital without loss of income. Marilyn received funding toward her graduate degree because of her work with Genie. The Riglers also accepted foster-family funds. Rigler said, "Someone had to meet the demands of research, and someone had to meet Genie's therapeutic needs, and I had both roles."

One physician familiar with the situation said that the Riglers, in providing for Genie, almost sacrificed their own family life.

Genie became the subject of a psychology doctoral dissertation. The researcher, Susan Curtiss, observed and tested Genie almost daily and took her shopping and on other outings. Curtiss eventually wrote a book about Genie and put all the royalities into a trust fund for Genie. She said she considered Genie her friend, and years later she said, "I'd give up my job, I'd change careers, to see her again."

After four years, Rigler's grant was not renewed. The review committee noted that "very little progress has been made" and that "the research goals projected probably won't be realized." Rigler acknowledged that the study was hard to evaluate but concluded that the grant was rejected because the reviewers simply did not understand the situation. "The study wasn't like most scientific studies. There were no controls. It's a study of a single case, and those are rare. They're anecdotal. They can't be done in the way of normal science ? There was pressure on me to be much more scientific in my approach. Measurements, that's what they wanted. Not that I didn't want to make measurements, but I didn't want to do so in ways that would be intrusive to the wellbeing of the kid. I was never able to satisfy people on the committee that I was doing this in the best way for science and for the child."

Meanwhile, Butler continued to lodge complaints against Rigler, objecting to his research, expressing concern that Genie had backtracked since leaving her own home, and pointing out that the Riglers had denied Genie's mother consistent visitation rights.

When the grant ended, so did Genie's life with the Riglers. Today, Genie lives in a home for retarded adults. One person familiar with the story said, "What I saw happen with Genie was a pretty crass form of exploitation. I had to realize that I was part of it and swear to refrain. It turned out that Genie, who had been so terribly abused, was exploited all over again. She was exploited extra-familially just as she was exploited intra-familially-just by a different cast of characters, of which I'm sorry to say I was one."

Included References

1. Ethics-In-Formation 1992 October; 4 (5 & 6):1, 8-10. Judith Andre, Research Ethics and the 'Wild Child.'

Additional Resources

1. Genie: An Abused Child's Flight from Silence. Russ Rymer, HarperCollins Publishers, New York, 1993.
2. Genie: A Psycholinguistic Study of a Modern-Day "Wild Child." Susan Curtiss, Academic Press, New York, 1977.
3. NOVA: Secret of the Wild Child. (Documentary about Genie). 1994. (Program No. 2112G. Available from WGBH/Boston 1-800-949-8670 for $19.95).
4. Syntactic Structures, Noam Chomsky, The Hague: Mouton, 1965.
5. Introduction to Linguistic Theory and Language Acquisition, Stephen Crain and Diane Lillo-Martin, Blackwell Publishers, MA 1999.
6. Wild Children, John Fairfax, Phoenix Press, Newbury, 1985.
7. Biological Foundations of Language, Eric Lenneberb,Wiley, New York 1967.
8. Video: Nell
9. Video: The Miracle Worker
10. Video: The Wild Child / L'Enfant Sauvage de l'Aveyron. 1970.
11. The Silent Twins, Marjorie Wallace, Prentice Hall, 1986.
12. The Forest's Child. Play about a fictitious wild child that was put on in theaters in Paris in 1800. Victor de l'Aveyron, the wild child found in France in 1800, was named after the play's main character. Victor de l'Aveyron: Dernier enfant sauvage, premier enfant fou, revised and augmented edition. Paris: Hachette, 1993.

Aims

Students should understand the following:

• Language acquisition in children and the "window" of opportunity for learning
• Role of auditory stimuli in language acquisition
• Language as a form of communication
• Forms of communication: verbal, non-verbal
• Consent for participation in experiments
• Protection of disabled individuals
• Plasticity of the young brain in acquiring any language
• Areas of the brain related to speech (Broca's and Wernicke's)
• Research ethics
• Structural differences in research studies
• Welfare of subjects of research
• Biological and emotional needs of humans
• Theories of language acquisition
• Bilingualism

Suggested Questions for Discussion

1. Was there an inherent conflict between the goals of research and Genie's need to receive treatment and care? Did harm come out of the researchers' good intentions?
2. What, if anything, could have been done differently so that both science and the stability and welfare of Genie could have been served?
3. Have you ever tried to communicate with someone who could not speak English and whose language you could not speak? How did you establish communication? Could you figure out patterns of words in the other language that you could use to make the interaction work? What was the most rewarding part? The most frustrating?
4. Did you ever invent a language or secret form of communication with a friend? Did you use words or hand motions or both? How did you put different words and signals together to make sentences? Could anyone outside your group decode your language?
5. Have you studied a foreign language? What is the difference between studying the language in the classroom and actually speaking with someone on the phone or on the street?
6. Does your family include younger children? Have you watched them learn to speak? How did they learn language?
7. What common "first sounds" do babies make? How do family members help babies learn to speak? How do family members interact verbally with babies?
8. When a family incorporates a new member-foster child, adopted child, relative, newborn baby, other-changes are felt by all persons. What sorts of changes might the Rigler's children have experienced with Genie in the house?
9. Do you think the Riglers fully considered how caring for Genie might affect the family? How did they define their role in caring for Genie?
10. Were the motives of Susan Curtiss different from those of the Riglers? If so, in what ways?
11. What happened to Genie when the Rigler's grant ran out? How do you think this affected Genie?
12. How significant a role did money play in what happened to Genie?
13. What options besides living in a group home might have been explored for Genie when she left the Rigler's home?
14. Who should give consent for experiments that are carried out on those, like Genie, who cannot give truly informed consent? Who should specifically be prevented from giving consent for such individuals?

Topics for Discussion/Written Assessment

1. Children raised in bilingual environments are often slower to speak than those who are raised in environments in which only one language is spoken. However, when they do speak, bilingual children keep each language separate and speak each language correctly. What insights does this provide about language acquisition? Do you think that bilingual children risk being misjudged as "slow" talkers when they are young?
2. Author Russ Rymer argues that studies of language acquisition in children who are deaf have "provided linguists with a thousand Genies, and what's better, with Genies who have not been psychologically abused, only linguistically deprived." Evaluate his comment.
3. Many Romanian orphans were brought to the United States in recent years and adopted by American families. Some of these children had been sequestered in cribs for many months and, like Genie, deprived of all types of stimulation. Studies of their brains indicate that certain areas simply did not develop and never would. Investigate the role of visual, auditory, and tactile stimulation on the development of the brain and on the ability of individuals to recognize stimuli. Find out how lack of responsiveness affects the ability of an individual to form relationships with others.
4. Sometimes pathological behavior is triggered by personal traumas. That may have been the case for Genie's father. Shortly before he began imprisoning his children and his wife, his mother had been hit by a car and killed. This incident may have sparked a personality change and his paranoia, which led to his abusive behavior toward his family members. Under the circumstances, how accountable should he be for what he did to Genie and the others?
5. What sorts of help should communities provide to individuals and families in which one member is acting in a way that is unhealthy for others? Where is the line between individual freedom and protecting the "larger society," which, in some instances, may just be the family?

Extension Questions for Further Investigation

• How do people learn to speak a language?
• One proposal, called the Environmentalist or Empiricist Hypothesis, holds that people learn language through their interactions with others, especially from hearing their parents speak.
• Another is that individuals are born with the rules for language ingrained in them. Thus, the ability to learn and use language reflects an essential feature of human design. Individuals then just need to master the specific words of the language into which they were born. This is called the Nativist, Inatist, or Rationalist Hypothesis.
• A third proposal, the Critical-Period Hypothesis, states that people must learn language within a critical period during early development if they are ever to comprehend and master the structure of language. How would you test each of these hypotheses? Which one(s) make most sense with respect to Genie? What arguments or examples can you give to prove or disprove each hypothesis? When would be the best time for anyone to learn a second language?
• By choosing to study Genie, an emotionally and mentally fragile child, did the researchers "doom" their research projects from the start?
• In the 7th century B.C., the Egyptian King Psamtik was curious about language development. His specific interest was to determine which was the world's "original" language. He performed a primitive experiment. He took two infants away from their mothers at birth. He hired a shepherd to look after the babies in his hut and feed them goat's milk. He ordered the shepherd never to speak to the children. When the babies were about two years old, the shepherd reported to Psamtik that one had said "bekos." He discovered that "bekos" was Phrygian for "bread." From this, the King concluded that Phrygian, an Indo-European language, was the first language from which all others were derived. Today, such an experiment would be considered highly unethical. What are some specific problems with such an experiment? What flaws can you find in the King's interpretation of his results?
• More than 50 wild children or "isolates" have been identified since the mid-1300s. Find out more about one of these children. What happened to the child? What were the circumstances of the child's upbringing? Compare and contrast the details of the story with Genie's experiences? How does the era in which the child lived affect the ways that people reacted to the child? Here are the names of some of the wild children: Hesse wolf-child, the Irish sheep-child, Kaspar Hauser, the first Lithuanian bear-child, Peter of Hanover, the second Lithuanian bear-child, the Karpfen bear-girl Tomko of Zips, the Salzburg sow-girl, Clemens the Overdyke pig-child, Dina Sanichar of Sekandra, the Indian panther-child, the Justedal snow-hen, the Mauretanian gazelle-child, the Teheran ape-child, Lucas the South African Baboon-child, Edith of Ohio, wolf-boy of Kronstadt, bear-girl of Karpfen, Victor de l'Aveyron, Bear-Girl of Fraumark, Wolf-child of Sekandra, Duck-boy of Holland, Confined Child of Pennsylvania, and John Ssebunya of Uganda.
• The movie The Helen Keller Story presents an interesting account of a child who suffered a severe illness at an early age and lost both her sight and hearing. Her parents were very loving and, fortunately, wealthy enough to provide her with a live-in tutor, Anne Sullivan. Research Helen Keller's life. How did her interrupted language development affect her social development? In what ways did Anne Sullivan intervene? In what ways did Helen's developmental course resemble Genie's? In what ways were they different? Sullivan was hired when Helen was younger than Genie. Did early intervention make a difference? If so, in what ways?
• Investigate efforts in California to promote bilingual education. What is the status of the bilingual movement? Why is bilingual education particularly important for that state? What other states are considering bilingual education programs?

Additional Activity

1. Invite a student from another country to your classroom. Find out what challenges the person faced in learning English.
2. Invite a language teacher to the class. What goes into learning new languages? What are the challenges for those who speak many languages?

Topics for Teacher Preparation

• Brain structures related to speech
• Language as a social construct
• Verbal and nonverbal forms of communications
• Theories of language development in the young child
• Biology of language development in the young child
• Roles of stimuli in language acquisition
• Codes for human research
• Biological and emotional needs of individuals
• Bilingual education programs

What did you learn from Genie's case?

What does Genie's case show us about brain development?

Where is Genie Wiley now?

What type of case study is Genie?