HISTORY

The Willowbrook Study

            The vulnerability of children, especially institutionalized children, as participants in research is demonstrated in a series of studies conducted from 1963 through 1966 at the Willowbrook State School, a New York institution for "mentally defective" children.  In order to gain an understanding of the natural history of infectious hepatitis under controlled circumstances, newly-admitted children were deliberately infected with the hepatitis virus.  Researchers defended the deliberate injection of these children by pointing out that the vast majority of them acquired the infection anyway while at Willowbrook, given the crowded and unsanitary conditions, and because only children whose parents had given consent were included.

            During the course of these studies, Willowbrook closed its doors to new patients, claiming overcrowded conditions.  However, the hepatitis program, because it occupied its own space at the institution, was able to continue to admit new patients.  Thus, in some cases, parents found they were unable to admit their child to Willowbrook unless they agreed to his or her participation in the studies.

            This controversial case raised important questions about the adequacy and freedom of consent, inadequate disclosure of the child's risk of later developing chronic liver disease, and the lack of information given to parents about access to doses of gamma-globulin for other children.