Posted on November 25, 2014 at 11:21 AM
The staff of the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) was pleased to welcome James H. Jones, Ph.D., to the office on November 21, 2014 for a discussion of his book Bad Blood: The Tuskegee Syphilis Experiment, A Tragedy of Race and Medicine. First published in 1981 (Revised edition, 1993), Bad Blood is a historical account of a non-therapeutic scientific experiment conducted by the U.S. Public Health Service (PHS) from 1932 to 1972 in rural Alabama. Bad Blood received the American Public Health Association’s Arthur Viseltear Award for the best book on the history of public health and was selected by the editors of The New York Times “Book Review” as one of the 12 “Best Books” published in 1981.
During his visit, Jones discussed how his research on Alfred C. Kinsey and the social hygiene movement in 1970 led him to discover records of the Tuskegee Study stored at the National Archives. The stated goal of the experiment was to document the effects of untreated syphilis in African American males living in and around Macon County, Alabama. Researchers identified several hundred men who had syphilis, failed to inform them that they had the disease, lied to them, and then provided them with iron tonic and aspirin instead of available syphilis treatment. Jones walked the staff through the timeline of the experiment, explaining not only how the study was conducted and by whom, but also why he believes it was able to go on for 40 years. Jones argued that several factors played a role in the study’s duration, including a series of internal promotions that allowed the same personnel to work on the project for so long. He said that such continuity meant that the PHS officers were never able to review the experiment with “fresh eyes.” Rather, they were “held hostage by their own success,” and as a result the experiment was never critically reexamined.
Jones also highlighted different logical points in time when the project could have been reviewed and shut down, including during World War II and the Civil Rights Movement. His story came full circle as he described how Albert Leisinger, Jr., the Deputy Archivist of the United States enabled Jones to gain access to the records of the Tuskegee Study, and how he, in turn, gave copies of the documents that he found to Fred Gray, the iconic Civil Rights attorney who worked to bring justice to the victims of the study. The Tuskegee Study remains a somber reminder of the importance of research ethics. It shattered many African-Americans’ trust in the medical community. “There is a deep, deep wound in the African American community,” said Jones. He recalled his conversations with nurse Eunice Rivers, the African-American nurse who was the chief liaison between the PHS officers and the subjects. She helped make the experiment possible by assembling the men for the “annual round ups” at the hospital, where they were examined and their disease progression was monitored. When the men died, she negotiated, often using burial stipends as incentives, to convince families of the deceased to agree to autopsies. Jones recalled what nurse Rivers told him during his last interview with her. As he was walking out the front door of her home, nurse Rivers took his hand and sobbed, “ Oh, Dr. Jones we should have told those men they had syphilis; and God knows we should have treated them.” Jones also described President William J. Clinton’s formal apology to the nation in April 1997 for the Tuskegee Study, and Jones expressed the hope that it was an important step toward restoring African-Americans’ faith in the medical profession.
The discussion with Jones coincides with the anniversary of the Bioethics Commission’s human subjects protection charge from the President. On November 24, 2010, in the wake of the revelations about PHS-supported research on sexually transmitted diseases in Guatemala, President Barack Obama requested that the Commission analyze what happened in Guatemala in the 1940s, and conduct a review of current Federal human subjects research protections. The request resulted in two reports: “Ethically Impossible” STD Research in Guatemala from 1946 to 1948 and Moral Science: Protecting Participants in Human Subjects Research. The unethical research done in both Tuskegee and Guatemala are examples of the harm that can occur without adequate human subjects protections in place. By shedding light and examining the mistakes of the past, the ethics community can move toward facilitating morally sound scientific practice now and in the future.