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Mon, May 18
Lois Verbrugge, Disability Experience & Measurement

The Limits of Autonomy: The Belmont Report and the History of Childhood

Publication Abstract

Carroll, T., and Myron Gutmann. 2011. "The Limits of Autonomy: The Belmont Report and the History of Childhood." Journal of the History of Medicine and the Allied Sciences, 66(1): 82-115.

This article examines the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research recommendations on children as research subjects in the context of the history of American childhood. The Commission's deliberations took place during the post-World War II period of rapid changes in understandings of childhood and adolescence, brought on in part by school children's highly visible roles as risk-taking protagonists in the polio vaccine trials and the civil rights movement; by the children's rights movement and court decisions granting children and adolescents greater autonomy in divorce cases and in delinquency and mental health hearings, among other rights; and finally by a renewed movement for child protection led by parents of disabled children and by polio survivors themselves. The National Commission's final recommendations emphasized the need for parents to approve, for children above age seven to assent to research, and for children in special care (either medical, psychiatric, or because they were orphans or had committed juvenile crimes) generally to be subjects of research only if there was some direct connection between the reasons for their special care and the objectives of the research. Ultimately, in these recommendations, the National Commission charted a middle ground between the children's rights movement, which advocated enhanced self-determination for children, and the disability rights movement, which urged greater protection for children.

DOI:10.1093/jhmas/jrq021 (Full Text)

PMCID: PMC2998285. (Pub Med Central)

Country of focus: United States of America.

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