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kak33 replied to the topic Informed consent: What if Henrietta Lacks checked No for research use? in the forum Clinical Research Basics 7 years, 7 months ago
According to Johns Hopkins, in the 1950’s the practice of obtaining informed consent from cell or tissue donors was essentially unknown among academic medical centers. But the Nuremberg Code was in place by 1947 as ethical principles for human experimentation.
Tuskegee Syphilis Study blatantly ignored this code. It was a notorious research project involving hundreds of poor African-American men that took place from 1932 to 1972 in Macon County, Alabama. The men in the study had syphilis, a sexually transmitted infection, but didn’t know it. The men were told that the study was only going to last six months but in actuality it lasted 40 years. They were told they had “bad blood” and given placebos, even after the disease became treatable with penicillin in the 1940s. Even after funding for treatment was lost, the study was continued without informing the men they would never be treated. In the mid-1960s, a PHS venereal disease investigator raised concerns to his superiors that it was unethical. However, officials decided to continue the study, in order to track the participants until all had died, autopsies were performed and the project data could be analyzed.
Details of the study was published in the New York Times and the Washington Star in 1972. Then the experiment stopped and the remaining survivors were treated in 1973. After that, congress passed a National Act in 1974 creating the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research which lead to the publication of the “Belmont Report” in 1979. Today, the Belmont Report continues to be an essential reference for institutional review boards (IRBs) and remains the basis of human subject protection regulations.http://www.history.com/news/the-infamous-40-year-tuskegee-study
http://www.ncjj.org/irb/History.asp
Kim, Won Oak. “Institutional Review Board (IRB) and Ethical Issues in Clinical Research.” Korean Journal of Anesthesiology 62.1 (2012): 3–12. PMC. Web. 28 Oct. 2017.