Bill Jenkins, a government epidemiologist who tried to expose the unethical Tuskegee syphilis study in the 1960s and devoted the rest of his career to fighting racism in health care, died on Feb. 17 in Charleston, S.C. He was 73.
His wife, Dr. Diane Rowley, said the cause was complications of sarcoidosis, an inflammatory disease.
Dr. Jenkins was working as a statistician at the United States Public Health Service in Washington in the 1960s when he first learned of the infamous Tuskegee study. In that study, the federal government deceived hundreds of black men in Macon County, Ala., where Tuskegee is the county seat, into thinking that their so-called “bad blood” — they weren’t told that they had syphilis — was being treated when it wasn’t.
The researchers had wanted to see what unchecked syphilis would do to the human body and used these men as guinea pigs, without their informed consent.
The disease, which is usually transmitted by sexual contact and can cause brain damage, paralysis, blindness and death, ran its course in several of the men. Some infected their wives, who passed it on to some of their children. The study lasted from 1932 to 1972.
A colleague told Dr. Jenkins about the study while it was still going on, but not in much detail. Dr. Jenkins did some research and found dozens of articles about it in medical journals, so he understood that it was not being done in secret. Even local chapters of the American Medical Association supported it.
Still, he was troubled by the ethics of the situation and spoke to his supervisor.
“Don’t worry about it,” his supervisor told him. Dr. Jenkins later learned that the supervisor was among those monitoring the study.
Dr. Jenkins, who was black, and some colleagues wrote an article about it and sent it to other African-American doctors and to a few reporters. But Dr. Rowley, his wife, said he did not include any background or explanatory information, and the news media did not pick it up.
Eventually, another health service epidemiologist, Peter Buxtun, gave the information to The Associated Press. The A.P. article appeared on the front page of The New York Times and elsewhere and shocked the nation. The study was soon halted.
For Dr. Jenkins, the Tuskegee study confirmed what he had long believed — that medical research was biased against people of color and that this study was just the tip of the iceberg.
It would change his life. He would go on to devote himself to trying to reduce disease and illness among African Americans and other people of color, in part by recruiting more such people into the public health professions.
Read the rest here: https://www.nytimes.com/2019/02/25/obituaries/bill-jenkins-dead.html