Descendants of those victimized in the infamous U.S. Public Health Service Study shared their stories with students and faculty.
As physicians face varying levels of mistrust about vaccinations within minority communities, first-year Sidney Kimmel Medical College (SKMC) students recently heard from descendants of those impacted by one of the medical research world’s most infamous ethical failures.
Some of that mistrust—seen today amid the COVID-19 pandemic— are multifactorial, but in part stem from the “USPHS Study of Untreated Syphilis in the African American Male,” a dangerously unethical study conducted in Tuskegee and Macon counties in Alabama between 1932 and 1972 by the U.S. Public Health Service and the Centers for Disease Control and Prevention in which 623 African American men were not informed of their participation nor offered available treatment.
Dr. Kristy Shine, SKMC’s director of Scholarly Inquiry, which is part of the JeffMD curriculum, helmed an innovative January 20 event which aimed to further Thomas Jefferson University’s role in addressing health disparities while bolstering its commitment to reducing racism in in medical education and health care.
Held virtually in the fall of 2020, SKMC’s annual “curriculum retreat” focused on the theme of reducing systemic racism through its curriculum, and featured a “shark-tank” style element in which ideas were presented to secure funding.
Dr. Shine’s idea, a finalist in that competition, successfully led to first-year SKMC students being presented with a research ethics lecture on the study. They then engaged directly in discussions with study descendants. The virtual event was co-sponsored by the Voices For Our Fathers Legacy Foundation (VFOFLF), an organization with a mission of preserving “the legacies and history of the 623 men victimized,” to foster social justice, education and public health.
In addition to the study descendants (all the victims have since passed), Ms. Lillie Head, President of VFOFLF; Dr. Arvilla Payne-Jackson, an anthropologist and Howard University professor who heads the foundation’s research efforts; and Drs. David Oxman and Robert Perkel, Jefferson faculty with expertise in ethics and professionalism, spoke. Dr. Bernard Lopez, associate provost for diversity and inclusion, set the stage with an introductory message.
“The event highlighted Jefferson’s commitment to our minority communities to have their voices in history, and in present-day health experiences, heard,” Dr. Shine said, recognizing the study as one of the primary causes for distrust of the medical community.
“We are making a statement that we want to work together to impact our future physicians, as a means of opening dialogue to reduce racism in health care,” she continued, adding that her department is making a donation to the Foundation’s scholarship fund. “We are trying to give students a first-hand look into history and ethics in a way that they will never forget, bringing medical ethics and history to life through a personal lens.”
How we bridge barriers is by taking an honest look at the history of what happened. –Dr. Kristy Shine
Dr. Lopez spoke about the importance of the event, at which 10 descendants participated in panel discussions and Q&A with students and faculty via ZOOM. Students are now required to write a reflective essay about what they learned from the discussions and how they can incorporate it into their scholarly work at Jefferson.
“To whatever extent we can train medical students to be knowledgeable about the impact of historic events on our perceptions of medical research and treatment today, we can have a lasting impact on health disparities and health care,” shared Dr. Shine, noting that the issues to be discussed are timely ones since Jefferson has been doing COVID testing in Black and underserved communities, an effort spearheaded by the Jefferson Health Design Lab.
“How we bridge barriers is by taking an honest look at the history of what happened,” she continued. “Opening doors of communication between students, faculty, and the African American community affected is just one step in a positive direction toward rebuilding some of that lost trust. Yes, the medical research community did something very unethical with lasting consequences. We recognize it and want to prevent it from happening in the future by training our physicians differently.”
Medical students are the future of healthcare, and we look forward to discussing the mindsets on how to care for people of different races, nationalities, cultures, economic standing. –Lillie Head
Ms. Head said that this is “a historic opportunity” for the victims’ children and grandchildren to discuss their perspective with medical students. It was the first time since the organization’s 2014 inception that such an opportunity presented itself.
“Medical students are the future of health care, and we embraced the chance to discuss the mindsets on how to care for people of different races, nationalities, cultures and economic standing. It’s so evident that there’s a disparity,” Ms. Head said. “I commend Jefferson for reaching out to discuss how we can all do better in caring for each other in the future. It’s an important and wonderful opportunity, and we’re very grateful for it.”
Ms. Head said she hopes that this becomes an annual event, and organizers would like to see it become a permanent fixture of the common curriculum which is taken by all medical students within the innovative scholarly inquiry track.
“Knowledge and empathy-based collaboration is a focus here at SKMC, the first medical school in the country to teach design thinking in its curriculum,” said Dr. Shine. “Receiving such tremendous support from the medical school leadership to apply it toward reducing racism in the medical world is truly inspiring.”