“History, despite its wrenching pain cannot be unlived; but if faced courageously, needs not be lived again” – Maya Angelou
Among the green pastures and businesses in Tuskegee lies a strong historical foundation. Tuskegee is a community deep rooted with faith, resilience, and forgiveness. It was these things that pulled them through the 40-year syphilis study that started out as a treatment program with good intentions, with funding from philanthropist Julius Rosenwald, and morphed into a unethical experiment that not only harmed the participants and their families, but also violated the trust of the community.
Trust is the foundation in which public health is set upon. This was known by the researchers and scientists involved in the United States Public Health Service’s Tuskegee Study of Untreated Syphilis in the Negro Male. They needed a connection to their target community; therefore, Nurse Rivers was the perfect bridge to that audience. Nurse Rivers was an African American women deeply rooted in the Tuskegee community as she had served as the communities public health nurse. They trusted and respected her fully; therefore, she was key to recruiting those with “bad blood” into the study.
On Health Equity
How do researchers help ensure the safety and rights of research participants? Through informed consent, which is when research participants understand the potential benefits and risks involved in the study. Dr. Stephen Sodeke, a bioethicist and professor of allied health sciences at Tuskegee University’s National Center for Bioethics in Research and Healthcare, defined bioethics as “identifying and addressing ethical, social, religious, and legal issues that arise in medicine, research, public health, and environmental science.” However, for the African American men of the Syphilis Study there were no such laws in place that discussed consent. Dr. Jontyle Robinson, the curator of the Tuskegee University’s Legacy Museum, introduced the case of Henrietta Lacks during our visit to the museum. Ms. Lacks nor her family, had any idea that cells had been taken from her body or used in research. “HeLa cells” derived from Ms. Lacks, have been used in countless research studies and even used to help create the polio vaccine. This does not negate the fact that the doctors should have gotten her permission before extracting her cells.
On Population Health
Felicia Chandler and her family took the time to discuss with us their memories of the Shiloh-Rosenwald School and how their community was targeted during the Syphilis Study. The motto of the school was”good, better,best, never let it rest, never stop until the good is better and the better is best”. Through Mrs. Chandler and the others that talked with us, this motto shows us a glimpse into the educational values instilled in the community. They are a close-knit, resilient community strong in faith and even stronger in facing adversity. Looking back, they feel that the U.S. Public Health Service unfairly deemed the people of their community as ignorant, poor and uneducated; and as such were made to feel unvalued and less than human. The people of this community worked hard, educated their children when African Americans could not attend public school, were land owners, with many of their residents continued on to do great things for this country. The Tuskegee Syphilis Study has had a lasting negative impact on the community as well as a general and deserved mistrust of the government and outside medical professionals. This study left residual trauma that is still felt today and perpetuates health inequities.
Our Final Thoughts
Considering all that we have learned today, a major theme to recognize is that each one of us is a “piece” of a jigsaw puzzle. Whether you are an educator, policy maker, or medical professional, together we are like a puzzle. We must figure out how to connect, raise awareness, and give vulnerable populations a voice. We need to carry all the lessons that we have learned, and apply them as we progress in our future professions and combat the adversities we are still witnessing today.