Willowbrook Conflict Between Research and Ethics

Topics: Human subject research, Ethics, Human experimentation in the United States Pages: 6 (2113 words) Published: July 25, 2010

Willowbrook Conflict Between Research and Ethics

July 05, 2010

Willowbrook Conflict Between Research and Ethics
The Willowbrook State School for children with mental retardation became notorious for and a prime example of a conflict between research and ethics when the details of a research project and the treatment of the residents. Willowbrook initially opened as a new hospital serving WWII veterans however this changed when in 1951, “the hospital was established as the Willowbrook State School for people suffering from mental disabilities” (Starogannis & Hill, 2008, p. 87). Willowbrook continued to serve as a fronted rehabilitation facility for the mentally developmentally delayed from 1956 -1971. Residents of the facility were subjected to more than rehabilitation as purported in the name of the facility. Mistreatment, terror, and even traumatic events have occurred within the walls of this school and documentation of many of the acts exists. The hepatitis study involved the residents of Willowbrook and the topic of the conflict between research and ethics. The research conducted at Willowbrook State School for children with mental retardation began in 1956 and involved the residents and administration of a live hepatitis virus to those selected or entered the research project. “Hepatitis studies were conducted at the Willowbrook State School for children with mental retardation from 1956 – 1971 because Hepatitis was a major problem at Willowbrook. Given the unsanitary conditions that the children lived in, it was virtually inevitable that children would contract Hepatitis” (Ethics in Mental Health Research [EMHR], n.d.). Consent obtained for the research project came about as a study described and explained to participants however many were enrolled into the study as the experimental area of the facility were the only spaces available in an area in which parents or legal guardians were anxious or possibly desperate to enroll a person into the school. “Parents were told that if they wanted their child to be admitted to Willowbrook, and skip the long waiting list, they would have to consent to these medical experiments” (Starogannis & Hill, 2008, p. 88). Methods and appropriateness of acquiring consent for the participants to be included in a research study when the only access to admission to the facility was placing the child in experimental facility. “In the Willowbrook research, parents had been asked for and had provided consent in an era when that was not uniform practice” (NAP, 2004). At the time the research, guidelines for research did not exist as these do today and protection for the participants of the study was not as prevalent as today. “The Willowbrook Class as they were to become called, consisted mostly of children and adolescents (but some adults as well), perhaps the largest proportion of profoundly retarded children of any New York institution in the day, and certainly the highest proportion of African-American and Puerto Rican patients in the state” (Starogannis & Hill, 2008, p. 87). An increase in population resulted from families bring children to the facility from throughout New York as they received little or no help from governmental agencies in the challenges encountered a child with special mental and/or physical needs, which then contributed to overcrowding. This overcrowding contributed to the spread of hepatitis in the facility and ultimately the hepatitis studies of Willowbrook State School for children with mental retardation. Thus far, the research has indicated the research findings invalid or without positive aspects. The information gleaned from the studies did ultimately lead to future success: “New York’s Willowbrook State School Researchers infected some of the child participants with a mild form of hepatitis during the initial stages of a study of the natural history, prevention, and...
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