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Case: Willowbrook Experiments
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.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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