THE WILLOWBROOK STATE HOSPITAL CASE Willowbrook State Hospital, an institution for the cognitively impaired (formerly called mentally retarded) children on Staten Island, experienced a large number of infectious diseases among its patients

THE WILLOWBROOK STATE HOSPITAL CASE Willowbrook State Hospital, an institution for the cognitively impaired (formerly called mentally retarded) children on Staten Island, experienced a large number of infectious diseases among its patients. Conditions at the hospital were not good, and most of the children suffered from hepatitis, measels, parasitic and respiratory infections. Hepatitis, in particular, was a problem, since many of the children were not ­toilet-trained and the disease was spread through an oral-intestinal route. Researchers determined that nearly all susceptible children became infected with hepatitis during their first year at the hospital. Between the years 1956 and 1970, 10,000 children were admitted to Willowbrook Hospital. Of those children, almost 800 were entered into a research project to gain information about the hepatitis with the hopes of eventually developing an immunization against the disease. All the parents of the children in the research project granted written consent. The children were injected with the same strain of hepatitis that was already prevalent in the hospital. The physician-researchers in charge of the project received intense criticism by subjecting the children to the research. The researchers defended their actions by stating that: a. The children that were used as subjects were unharmed or, at least, not made any more ill than they already were. b. The children may have even benefited, since they were placed in an isolated unit and they were not exposed to the other infectious diseases. c. The children in the study may have had a subclinical infection, which would render them immune to the hepatitis virus. d. The children may have been better off as a result of the research, since the study added to the growth of information about the disease. e. All the parents had given their informed consent. The medical community was outraged about the experiment and raised the following objections: a. Cognitively impaired persons, especially children, should not be used for research experimentation. b. The children are unable to defend or speak for themselves. c. There is a greater possibility of abuse with children than with adults. d. The parents may have been coerced to grant consent, since the hospital was full and there was only space to admit children into the hepatitis unit. e. The experiment did not appear to be therapeutic. f. The benefits to the hospital and the community at large were minimal. g. The experiments were designed to confirm existing studies about the effects of gamma globulin immunization for hepatitis. h. Researchers withheld from the nonresearch children (control group) an inoculation that may have been effective against hepatitis. Since these 800 children were isolated from other children, they did not acquire infectious diseases prevalent at that time. Ultimately, the claim that the children in the research study benefited from the project was upheld in court. (Summarized from G. Pence. Classic Cases in Medical Ethics. McGraw Hill Publishing Company, 1990.) [Instructor’s Note: See discussion questions at the end of this chapter.] Using the Willowbrook State Hospital case discussed at the beginning of the chapter, respond to the following questions: a. What are the pros (positives) of this study? b. What are the cons (negatives) of the study?· c. Is society ever justified in permitting this type of research when the outcome benefits only some members of society. Why or why not? d. Should public funds be used to pay for this type of research on children? Why or why not? . e. Some say that the final outcome of the Willowbrook case falls into a “gray area” of ethics in which there is no one clear answer. If this is the case, then, in your opinion where do we draw the line of testing children?

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