U.S. Public Health Service Syphilis Study at Tuskegee
From 1932 to 1972, the Public Health Service conducted a study on black men with syphilis, who were not offered treatment. In 1972 the US Government started a health benefit program for participants and families and in 1997 apologized for the study. The last widow receiving benefits died last month.
In 1932, the Public Health Service, working with the Tuskegee Institute (now known as Tuskegee University), began studying syphilis in a group of black men in hopes of learning more about syphilis and trying to justify treatment programs for blacks. The study initially involved 600 black men – 399 with syphilis, 201 who did not have the disease. The study was conducted without the benefit of patients' informed consent.
During the study, participants were told that they were being treated for "bad blood," a local term used to describe several ailments, including syphilis, anemia, and fatigue. In truth, they did not receive the proper treatment needed to cure their illness.
In the wake of the U.S. Public Health Service Syphilis Study at Tuskegee and other studies, the federal government took a closer look at research involving human subjects and made changes to prevent the moral breaches that occurred in Tuskegee from happening again.
In 1997, President Bill Clinton made a formal apology to the survivors and the wives, family members, children and grandchildren of study participants. He said, "The American people are sorry -- for the loss, for the years of hurt. You did nothing wrong, but you were grievously wronged. I apologize and I am sorry that this apology has been so long in coming."
Tuskegee Health Benefit Program
The U.S. government established the Tuskegee Health Benefit Program (THPB) to provide lifetime medical and health benefits to the participants, their wives, children and grandchildren. Currently, 14 children and two grandchildren receive benefits from this congressionally-mandated program.
Annual visits are made to the clients to ensure that they are receiving medical services and to resolve any health-related problems they may be experiencing. The visits also allow the program staff and health care representatives the opportunity to interact on a personal basis about the clients' health care needs.
The majority of the THPB recipients reside in Georgia, while others live in the Southeastern and Midwestern parts of the United States. The last study participant died in 2004. The last widow receiving THPB benefits passed away just one week after the first African-American President of United States took the oath of office in January 2009.
Bioethics Center and Fellowships
Other positive milestones have come in the aftermath of the infamous study. In 1997, CDC funded The Tuskegee University National Center for Bioethics in Research and Health Care*, the first bioethics center founded at an historically black university. This was followed by the creation of the CDC - Tuskegee University Ethics Fellowship Program. This fellowship program, established in 2008, serves both institutions, as well as promises more extensive expertise on ethical issues that impact the practice of public health.
As CDC's former Chief Science Officer Dixie Snider, Jr., MD, MPH (RADM [Ret.], USPHS) said, "We have moved from isolation from one another to partnership with one another. This fellowship then takes us beyond reconciliation to working for a common purpose–improving the health of underserved and marginalized communities. Thus, in the past decade, we have journeyed from silence to dialogue."
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