Magazine article The Exceptional Parent

Genetic Manipulation for Individuals with Disabilities: Does CRISPR-Cas9 Provide a Magic Bullet?

Magazine article The Exceptional Parent

Genetic Manipulation for Individuals with Disabilities: Does CRISPR-Cas9 Provide a Magic Bullet?

Article excerpt

"In 1972, WABC-TV in New York sent rookie reporter Geraldo Rivera to Staten Island to infiltrate the Willowbrook State School. Robert Kennedy had visited the mental institution in 1966 and declared: 'Willowbrook State School was not fit even for animals to live in' Geraldo gained entry using a stolen key and documented the brutal horrific living conditions of its disabled residents, which included several children with mental limitations. The report led to an immediate government inquiry." (1)

More than 45 years have passed since the investigative reporter Geraldo Rivera's documentary on Willowbrook State School in New York City revealed the gruesome and neglected conditions in which individuals with intellectual and physical disabilities lived under the protection of the state.

In the 1840s, activist Dorothea Dix lobbied for better living conditions for individuals with varied mental conditions after witnessing the dangerous and unhealthy conditions in which individuals with intellectual and physical disabilities were housed in jails. Over a 40-year period, Dix successfully persuaded the U.S. government to fund the building of 32 state hospitals for the care of these patients.

By the mid-1950s, a movement for deinstitutionalization and outpatient treatment for people with disabilities began in many countries, facilitated by the development of a variety of antipsychotic drugs. Deinstitutionalization efforts reflected a largely inter national movement to reform the "asylum-based" mental health care system and move toward community delivery care. This movement was based on the belief that these patients would have a higher quality of life if assimilated and treated in their communities rather than in large, undifferentiated, and isolated mental hospitals.


1. In 1907, Indiana was the first of more than 30 states to enact a compulsory sterilization law, allowing the state to "prevent procreation of confirmed criminals, idiots, imbeciles and rapists." By 1940, 18,552 people with mental illness were surgically sterilized.

2. In 1936, Dr. Walter Freeman and his colleague James Watt performed the first prefrontal lobotomy. By the late 1950s, an estimated 50,000 lobotomies were performed in the United States.

3. In 1954, Smith-Kline and French marketed Thorazine, chlorpromazine, the first antipsychotic drug approved by the Food and Drug Administration. It quickly becomes a staple in asylums.

4. In 1955, the number of people with mental illness in public psychiatric hospitals peaked at 560,000; reduced to 43,000 in 2010. 2

5. Between 1977 and 2011, the total number of people with intellectual and developmental disabilities receiving residential services grew from almost 247,800 to 460,600 (an increase of 85.9%). There were important differences in the pattern of change, depending on the size of the institution and whether the setting was state or non-state operated. The number of people living in settings of 16 people or more declined from almost 207,400 in 1977 to 55,100 in 2011. (3)


"Eager to speed developments of revolutionary treatments, the Food and Drug Administration recently announced that it would expedite approval of experimental gene therapies... The genes intended to fix a defect in the body are carried into each cell by a modified virus, usually a disabled version of an adenovirus or a lentivirus ... If a company wanted to deliver a gene therapy to lung or liver, where the organ 'surface area is huge' the current price could be as much as $3 million per patient. it might cost a mere $30,000 for the viruses in the future." (4)


It is a unique technology that enables geneticists and researchers to edit part of the genome by removing, adding or altering sections of the DNA sequence. It is faster, cheaper and more accurate than previous techniques of editing DNA and has a wide range of potential applications. …

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