Rustifications Justifications

The researchers justifications offered several justifications for their work. First, they argued, the benefits of the research outweighed any potential risks. Second, they had infected the children only with a relatively mild strain of the virus and therefore had decreased the odds that the children would become infected with the far less common but considerably more dangerous strain that also existed in the school. Third, the children who participated in the experiments lived in better conditions than did the others in the institution and therefore were protected against the many other infections common there. Fourth, the children would probably become infected with hepatitis anyway given the abysmal conditions in the institution. Fifth, the researchers believed they should not be held accountable because the parents had given permission. Using these arguments, the researchers had obtained ap- proval for their experiments from the state of New York, the Willowbrook State School, and New York University. Over a 15-year period, they published a series of articles based on their research without any reviewer, editor, or reader raising ethical objections.

In 1970, however, the ethical flaws of these experiments were exposed in the popular media and in medical journals. These experiments, many argued, violated the basic principle of informed consent. The parents had not given truly voluntary consent because they could get their children admitted to Willowbrook only by allowing them to participate in the hepatitis experiments. In addition, parents had not given truly informed consent because researchers had not told them that gamma globulin could provide long-term immunity to hepatitis. Opponents of the study also questioned why the researchers experimented on children, who could not give informed consent, rather than on hospital staff. Finally, opponents questioned why the researchers—who, after all, were pediatricians—had chosen to take advantage of this “opportunity” to study hepatitis rather than try to wipe out the epidemic. This debate exploded in the New York media and, in the ensuing public outcry, the research ground to a halt.

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