Chapter  7: Human Experimentation

Case:  Willowbrook Experiment

Mentally retarded children housed at the Willowbrook State School in Staten Island, New York, were intentionally given hepatitis in an attempt to track the development of the viral infection. The study began in 1956 and lasted for 14 years.
The researcher also wanted to determine the effectiveness of gamma globulin injections as protection against hepatitis.  They justified their deliberate infections and exposures by claiming that given that there was a high rate of infection in the institution it was practically inevitable that the children would become infected.

Videos on you tube about Willowbrook, a former resident and the current care for MRDD individuals in the state of Texas. Willowbrook is referred to in the online text in section 1 of chap. 7 

clip of actual Willowbrook footage 

http://www.youtube.com/watch?v=-S9twQYC82U&NR=1

This is Bernardís story. He is a former resident of the Willowbrook State School

http://www.youtube.com/watch?v=qZFTQ3_04i0&NR=1

This video depicts the current state of care for individuals with developmental disabilities in the state of Texas

http://www.youtube.com/watch?v=nmb8BZjC9GM&feature=related

In a series of letters published in a journal there was a discussion of the moral nature of the experiment.  The issues include : the vulnerability of the test subjects, interference with informed consent and the non-therapeutic nature of their experiment for their subjects.

Stephen Goldby, Saul Krugman, M.H. Pappworth and Geoffrey Edsall.  The Willowbrook Letters: Criticisms and Defense.  The Lancet, April 10, May 8, June 5, and July 10, 1971

Outline by  Don Berkich,  University of Texas, Corpus Christi (by permission)

Goldby's Criticisms

  • It is morally wrong to perform an experiment on either a normal or a mentally retarded child when no benefit can result for that child.
  • The institutionalized should not be used for human experimentation.
  • A health care professional on the staff of a substandard institution has a duty first and foremost to improve the institution: It is morally wrong for the health care professional to turn the institution's failings to experimental advantage.

Krugman's Defense

  • There was no additional risk for the subjects. Under the normal conditions at the institution the subjects would have been exposed to the same strains of hepatitis.
  • Experimental subjects had a lowered risk of complications since they were housed in a special unit where there was little danger of exposure to other diseases.
  • Experimental subjects had the chance of benefiting from immunization.
  • Experimental subjects were obtained only with informed consent from parents.

Pappworth's Criticisms

  • Experimentation on children, even with parental informed consent, is illegal unless it is in the interests of the child.
  • According to one report, parents were told that the only way their child could be admitted to Willowbrook is through the hepatitis unit.
  • The intention of the experiment was never the immunization of the children. That was merely an expected consequence. A moral purpose is required to justify an experiment.
  • Every patient has a right to be treated decently by physicians--i.e., every physician has an obligation first and foremost to the patient. The patient's right supercedes every consideration about what would benefit humanity.

 

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Copyright Philip A. Pecorino 2002. All Rights reserved.

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