TUSKEGEE, Ala. - (April 23, 2007) - It was 75 years ago that the U.S. Public Health Service conducted the "Tuskegee Study of Untreated Syphilis in the Negro Male." And though treatment existed for the disease, hundreds of African-American men and their families went through needless pain and suffering.
On April 19 and 20, the Tuskegee University National Center for Bioethics in Research and Health Care also marked the 35th year since the Study ended and 10th anniversary of the Presidential Apology. The commemoration, held during National Minority Health Month, carried the theme "75-35-10 and Beyond: Experimentation, Disclosure, Commemoration and Transformation."
"This theme was selected because 2007 marks the anniversaries of three significant dates in the history of the United States Public Health Service Syphilis Study in Macon County," says Dr. Vanessa N. Gamble, director of the National Center for Research and Health Care. "In addition, this theme underscores the commitment of the Bioethics Center to transform the negative legacy of the Syphilis Study."
President Bill Clinton apologized on May 16, 1997, to the Study participants, their families, Tuskegee University, the Macon County community and African-American citizens for the egregious action of the federal government.
The annual commemoration, which is the first University event to recognize the anniversaries this year, also celebrates the 1999 establishment of the National Center for Bioethics in Research and Health Care. The Center continues to build upon the rich history and commitment of Tuskegee University to seek improvements in the health and health care of people living in underrepresented communities.
"I feel that it's very helpful to have this commemoration and to fight health disparities. My father was a participant of the Syphilis Study, and he always spoke about Nurse Rivers and how he was proud to be in the Study," says Louise Fields of Tuskegee, Ala. "He actually believed he was getting good treatment."
Dr. Annette Dula, who is one of a small number of African-American bioethicists in the nation, spoke during the two-day event. Dr. Dula, a visiting scholar at the Center for Bioethics and Law at the University of Pittsburgh and an adjunct faculty member at the University of Colorado's Center for Values and Social Policy, says there are many contributing factors that hinder proper health among African Americans.
"It's time to take a look at the role of corporations that play in undermining the health of African Americans and the media's role in permeating myths, lies and misconceptions," Dr. Dula says. "Focusing on these broader issues will forward the University to a new level of leadership in the realm of health disparities."
Dr. Dula's panel session included Carmen Head, director of School Health Programs at the Society for Public Health Education; Dr. Bryan Lindsey, acting deputy director of the Office of Health Disparities in the National Centers for Disease Control and Prevention and manager of Tuskegee Health Programs; and Muhjah Shakir, assistant professor of Occupational Therapy in the University's College of Veterinary Medicine, Nursing and Allied Health.
Head's presentation, "Whatsoever You Do to the Least of My People: A lesson On Experimentation and Disclosure," recounts the history of the U.S Public Health Service Study in Macon County and challenges everyone to transform the legacy. "We are the legacy of the Syphilis Study and each of us has a tremendous role in transforming the legacy by making sure this part of history never repeats itself," she says. "We need to make a personal commitment by being health advocates and knowing what our rights are as a patients by seeing the doctor directly, having proper health screenings and living health through diet and exercise."
Head, whose grandfather participated in the Study, has worked on strengthening the capacity of historically Black colleges and universities to respond to health disparities through research, training and community engagement.
Dr. Lindsey's presentation, "The CDC's Response: Commemorating and Transforming the Legacy," illustrates the CDC's role with Tuskegee University. "The CDC is in full support of the Bioethics Center, where we have provided $2 million for the last eight years in support of the programmatic goals," Lindsey says. In addition to the CDC's support of the Bioethics Center, his department also runs the
Tuskegee Health Benefit program, which looks after the medical and health benefits of the families of the survivors who participated in the Study.
Though a commitment to fighting health and health-care disparities is the focus of much of the work done by the Bioethics Center, the commemoration recognizes what survivors of the Study endured and highlights their stories. Shakir's presentation "Tools for Transformation: The Bioethics Community Quilt Project," showcased a quilt project that chronicles the history of the syphilis Study.
"I was inspired to do the quilt project because quilts tell stories, and it brought people together to talk about a difficult subject and the women who have been left out of the dialogue of the Study," says Shakir, who started the project with Macon County women, ages of 50-97.
The commemoration culminated with a luncheon featuring Dr. Anne C. Beal, senior program officer for Quality of Care for Underserved Populations at the Commonwealth Fund. The Commonwealth Fund is a private foundation that aims to promote a high-performing health-care system that achieves better access, improved quality and greater efficiency, particularly for society's most vulnerable, including low-income people, the uninsured, young children and elderly adults and other underserved communities.
"When we talk about the African-American community, we have an issue of trust that needs to be embedded in the issue of health disparities that face our community," Dr. Beal says. "So today, we commemorate what has happened in the past, and we should use that experience to make ourselves better while we move forward."
Awards and gifts of appreciation went to the families of Study participants; Dr. Dula and Francis Krouse, education coordinator for the Bioethics Center, received the Sankofa Bird Award. The student members of the 2007 Bioethics Ethics Bowl and Business Ethics Bowl teams received recognition for their achievements this year. Michelle Hammon, a Booker T. Washington High School student received the Charles Pollard Scholarship. The scholarship, named after the lead plaintiff in the lawsuit against the government, covers full-tuition, room and board at Tuskegee University.
"We here at Tuskegee will never forget the men and families who suffered the indignity at the hands of their government." University President Benjamin F. Payton says. "The faculty and staff of the University use the memory of this injustice to propel us in our work to promote equity and justice in the fields of health and health care."
