Forty-five years ago, the nation learned about the Tuskegee Syphilis Study. Its repercussions are still felt today.
Sarah Toy, USA Today
It was 45 years ago Tuesday, when the nation first learned about the horrors of a federally funded experiment on unsuspecting African Americans with syphilis in rural Alabama — a study whose repercussions are still being felt today.
Medical researchers and providers withheld treatment from about 400 Black men in Tuskegee, Ala., from 1932 to 1972 in order to study the course of the untreated disease. Researchers did not obtain informed consent from these men, nor did they tell them they were not being treated for syphilis. Instead, the men were told they were being treated for “bad blood.”
Even when penicillin became the drug of choice for treating syphilis in 1945, researchers did not offer it to them.
Tuskegee burst into the public consciousness when The Associated Press published a story exposing the study on July 25, 1972. Outrage ensued, the study ended, and the men filed a lawsuit the following year, resulting in a $9 million settlement in 1974. President Clinton issued a formal apology on behalf of the U.S. government in 1997.
Tuskegee has been up as one reason for the continued distrust between the Black com-munity and health providers and medical researchers “Tuskegee plays a significant role in the mindsets of the African American community,” said Lawrence J. Prograis Jr., a physician and adjunct professor at the Center for Clinical Bioethics at Georgetown University Medical Center who has written extensively about the Tuskegee Syphilis Study. “It made a significant impact of distrust within the community that still lingers on.”
Freddie Lee Tyson was one of the men enrolled in the study. His daughter, Lillie Tyson Head, is the chairwoman of the Voices for Our Fathers Legacy Foundation, which represents the descendants of the men who were in the Tuskegee study and works to preserve and share their life stories. She said the study still affects how she views the health care field.
The fact that the study was carried out by “professionals that had the code of ethics and the swearing of healing and helping and aiding” has made her think twice about trusting health care providers, she said.
The study ended decades ago, but Head said “it still has an impact on how your feelings are and how your trust is toward (health) professionals,” adding she sometimes feels apprehension about whether she is being told the truth.
In 1974, Congress signed the National Research Act into law, creating the National Com-mission for the Protection of Human Subjects of Biomedical and Behavioral Research and establishing ethical guidelines for research involving humans.
Today, human subjects in research studies have rights that ensure their autonomy, including informed consent and the right to leave a study at any time and for any reason. Every new study must also be re-viewed and approved by an Institutional Review Board, which goes over the study’s protocols and determines whether its ethical standards pass muster.
But many still feel uneasy about being a part of clinical research.
Vann R. Newkirk II, a writer for The Atlantic who is Black, wrote in a 2016 piece that he doesn’t remember how he learned about Tuskegee — “it was just always there.”
“Like my innate discomfort around police and my knowledge of ‘how to act’ in mixed company, the Tuskegee Study and an anxiety about a malevolent medical system became part of my language for navigating and understanding the world from the earliest, and I didn’t really have a choice in the matter,” he wrote.
Newkirk went on to describe how Tuskegee shapes his current beliefs about medicine and health more than he cares to admit, even after studying public health as an undergraduate and working as a research assistant to Dr. Bill Jenkins, one of the CDC whistle-blowers who called attention to the Tuskegee study and later managed the Participants Health Benefits Program for survivors.
“I still have trouble trusting physicians and have declined participation in some health studies that probably would have been useful to me,” Newkirk wrote. “My wariness still comes after years of research in trying to quantify that same wariness in older Black men and trying to figure out ways to get them to overcome their own suspicions.”
African Americans are underrepresented in medical research. Although they make up 12% of the population, they only make up 5% of clinical trial participants, according to the U.S. Food and Drug Administration (FDA).
“There is not equal representation in clinical trials,” said Regina James, the director of clinical and health services research at the National Institute On Minority Health and Health Disparities of the National Institutes of Health (NIH).
“There’s concern about their safety,” she said. “If they participate in the research, what does it mean? Will they be told everything? Will they be used as a guinea pig?”
James said physicians and researchers should focus on cultural competency and work to meet potential participants where they are. A diverse recruiting staff can be helpful as well since people are often more comfortable with those from their same cultural background. The NIH is currently funding studies to look at how to improve recruitment and retention of minority subjects in clinical trials, she said.
“The importance of having diversity in clinical trials cannot be overstated. (They are) essential in deciding which treatment works best for each of us,” she said.
She added: “We need to ensure that research findings are beneficial for everyone.”
Contributing: Sydney Greene, USA TODAY
Follow Sarah Toy on Twitter: @sarahtoy17