July 12, 2024, commemorates the 50th anniversary of the enactment of the National Research Act. The act created federal rules to protect human participants in research and led to the formation of the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research to identify ethical standards for research involving humans. The protection for human research subjects in the United States evolved throughout the 20th century as a result of a several incidences of unregulated, unethical research conducted worldwide, most notably the Tuskegee Syphilis Study (1932–1972). Conducted by the U.S. Public Health Service, the study involved hundreds of Black men, many of whom were infected with syphilis. Though the men were given free medical examinations, they were not told about their disease and were denied treatment with penicillin, a proven cure, when it became available in the 1950s. The U.S. Department of Health, Education, and Welfare stopped the study only after its existence was made public and it began facing backlash.
The passage of the National Research Act 50 years ago, along with subsequent updates to it, put into place mechanisms to protect human subjects in research, such as informed consent and voluntary participation, ensuring the ethical treatment of all who take part. Today, Stanley Manne Children’s Research Institute and Ann & Robert H. Lurie Children’s Hospital of Chicago are dedicated to the highest ethical standards for human subjects research. Behind the vigilance of the Office of Research Integrity and Compliance and the Office of Clinical and Community Trials, and the focus of our research community, we move our science forward under the principles and spirit established by the National Research Act.
