Bill Jenkins, a government whistleblower who tried to halt the Tuskegee syphilis study that used black patients as guinea pigs, then switched his focus to epidemiology and spent decades battling racism in health care, died Feb. 17 at a hospital in Charleston, S.C. He was 73.
The cause was complications of sarcoidosis, an inflammatory disease, said his wife, Diane Louise Rowley.
Dr. Jenkins had been an advocate for racial equality and social justice since high school, when he helped register people to vote in segregated South Carolina. He went on to work for the Student Nonviolent Coordinating Committee while studying at historically black Morehouse College in Atlanta, and was once arrested for protesting the whites-only policy of an Atlanta restaurant owned by Lester Maddox, later the governor of Georgia.
In 1967, he became one of the first African Americans recruited to the U.S. Public Health Service Commissioned Corps. Dr. Jenkins said he wanted to be part of a new era at the uniformed service, at a time when many African Americans understood “public health” to mean keeping “black diseases” from infecting whites.
He soon launched an anti-discrimination newsletter titled the Drum, covering what was then the Department of Health, Education and Welfare, and was working as a statistician when a physician told him about the Tuskegee experiment.
Conducted by the Public Health Service, the study was named for the seat of Macon County, Ala., where researchers ostensibly treated 399 poor black sharecroppers and laborers for their “bad blood” — a catchall term that really referred to syphilis, a sometimes-fatal sexually transmitted disease.
Acting without the informed consent of the participants, physicians left the disease untreated while studying its long-term effects, performing painful procedures such as spinal taps purely for research. While most other Americans found treatment through penicillin, which became a routine antibiotic by the 1940s, the subjects in Macon County were left to wither away. Many died of complications from the disease, and some survivors became blind or crippled.
The experiment was not conducted in secret. More than a dozen major articles about the study appeared in medical journals, according to Susan M. Reverby, a health-care historian at Wellesley College, although the participants were often described simply as “volunteers.” In the mid-1960s, a young Detroit doctor named Irwin Schatz read one such article and wrote a letter to the study’s leaders, urging them to “reevaluate their moral judgments.”
The letter was filed away without a response. And when Dr. Jenkins approached his adviser with concerns about the study, he was told, “Don’t worry about it.”
He and several like-minded colleagues wrote an article for the Drum, outlining their ethical concerns about the study. They also sent articles about Tuskegee to several newspapers, including The Washington Post. “We didn’t get very far with that approach,” Dr. Jenkins recalled in a 2017 interview with the podcast Choice/Less, saying that he and his colleagues should have written a news release instead.
The details of the Tuskegee experiment remained little known until 1972, when Peter Buxtun, a former investigator with the Public Health Service, provided details on the study to the Associated Press. Originally published in the Washington Star, reporter Jean Heller’s article soon appeared on the front page of newspapers across the country, and the experiment was ended in late 1972. By then, only 74 participants were still alive.
The study was later likened to Nazi medical experiments conducted during World War II and was part of what Reverby described as “the holy trinity of bioethics,” a set of unethical experiments that included a Brooklyn hospital’s injection of live cancer cells into 22 patients, and a school on Staten Island that gave hepatitis to children with intellectual disabilities.
All three cases were credited with spurring the passage of the National Research Act, which created a commission to identify basic research principles and formalized an ethics review process for federally funded studies.
The Tuskegee study proved transformative for Dr. Jenkins, who said he was haunted by the experiment and his failure to end it. Realizing he needed better training, he returned to graduate school and joined the Centers for Disease Control and Prevention as an epidemiologist, documenting syphilis cases around the country. In the mid-1980s, he began focusing on AIDS, which disproportionately affected African Americans.
His wife, a former CDC epidemiologist and public health professor at the University of North Carolina at Chapel Hill, said he helped ensure the existence of “special programs to educate African American communities about AIDS and its prevention.”
“He was always a stalwart in making sure the research he was involved in was highly ethical,” she added. “He got involved several times at CDC in objecting to planned studies, trying to make sure a study was not started, or was revised to the point where it would have a better, ethical approach.”
For nearly a decade, Dr. Jenkins also ran the Tuskegee Health Benefit Program, in which the government provides medical coverage and an array of health benefits for the remaining survivors of the Tuskegee syphilis experiment and their families. “I try to give them the care that I would want to give to my mother,” he told the New York Times in 1997.
Dr. Jenkins was also part of a group of historians, bioethicists and health professionals known as the Tuskegee Syphilis Study Legacy Committee, which issued a 1996 report urging President Bill Clinton to apologize for the study on behalf of the country.
The president delivered a formal apology on May 16, 1997, before a White House audience that included five of the eight surviving participants as well as families of the deceased. (The last survivor of the study died in 2004.)
“The United States government did something that was wrong — deeply, profoundly, morally wrong,” Clinton said. “It was an outrage to our commitment to integrity and equality for all our citizens. . . . To our African American citizens, I am sorry that your federal government orchestrated a study so clearly racist.”
William Carter Jenkins was born in Mt. Pleasant, S.C., a suburb of Charleston, on July 26, 1945. His mother was a schoolteacher, and his father owned a funeral home and ran a restaurant.
Dr. Jenkins received a bachelor’s degree in mathematics from Morehouse in 1967 and a master’s degree in biostatistics from Georgetown University in 1974. He also received a master’s in public health in 1977 and a doctorate in epidemiology in 1983, both from the University of North Carolina.
Dr. Jenkins spent much of his career working to expand the ranks of minorities in public health. At Morehouse, where he worked as a professor, he established a master of public health program and partnered with the CDC to form Project Imhotep, a summer internship designed to boost the public-health skills of minority students. He once estimated that more than half of the African Americans with a doctorate in epidemiology had been trained through the program and related activities.
He also taught epidemiology at the University of North Carolina, helping found an annual minority health conference at the school, and established the Society for the Analysis of African American Public Health Issues, an affiliate of the American Public Health Association.
In addition to his wife, whom he married in 1983, survivors include a daughter, Danielle Rowley-Jenkins.
When Clinton issued the Tuskegee apology in 1997, Dr. Jenkins urged public-health officials to view the remarks as just one more step in the fight to end racial injustice.
“There’s a tendency to believe that African Americans are reluctant to participate in research because of this one study and I think that belittles the concerns of African Americans,” he told the Times. “They are concerned about public health research because they’re alienated from American society in any number of ways, and this study is the bellwether. It’s much bigger than just this study and we’re going to have to do a lot more work than just apologize for this.”