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NY Times, Feb. 26, 2019
Bill Jenkins, Who Tried to Halt Tuskegee Syphilis Study, Dies at 73
By Katharine Q. Seelye
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.
He was one of the first researchers at the Centers for Disease Control
and Prevention to recognize how dramatically AIDS was affecting black
men. He helped organize the first conference on AIDS in underserved
neighborhoods and became the C.D.C.’s director of AIDS prevention for
minorities.
And for 10 years he oversaw the government’s Participants Health
Benefits Program, which provides free lifetime medical care to the men
of the Tuskegee study and their eligible family members.
A doctor in Tuskegee, Ala., drew blood from a subject of the
government’s experiment on black men to determine what happens when
syphilis is left untreated. The men were deceived into thinking that
they were being treated.CreditNational Archives at Atlanta
“What they deserve is the best medical care we can provide,” Dr. Jenkins
told The Times in 1997. “I try to give them the care that I would want
to give to my mother.”
Susan Reverby, author of “Examining Tuskegee: The Infamous Syphilis
Study and Its Legacy” (2009), said in a telephone interview that Dr.
Jenkins had successfully fought to expand the benefits for survivors and
their families, insuring that health care, like nursing homes, would be
covered in addition to medical care.
“They were the only people in America who would have universal health
care,” Ms. Reverby said.
Dr. Jenkins was also among those who helped extract an official apology
from the federal government for the Tuskegee study. In 1997, President
Bill Clinton invited the surviving eight subjects of the Tuskegee study
and their families to the White House; five of the survivors went, and
on May 16 Mr. Clinton delivered a formal apology on behalf of the country.
“No power on Earth can give you back the lives lost, the pain suffered,
the years of internal torment and anguish,” Mr. Clinton said. “What the
United States government did was shameful, and I am sorry.”
The apology is commemorated every year at the National Center for
Bioethics in Research and Health Care at Tuskegee University; the
government paid for the center as part of the apology, and Dr. Jenkins
helped establish it.
“The government was at the epicenter of the Tuskegee study, and Bill
Jenkins had the courage to bring forth his ethical concerns while he was
still a government employee,” Dr. Rueben Warren, director of the
bioethics center, said in a telephone interview.
“He spoke truth to power,” he said.
William Carter Jenkins was born on July 26, 1945, in Mt. Pleasant, S.C.
His father, Albert Daniel Jenkins, was a funeral home director and
restaurant owner; his mother, Martha (Wilson) Jenkins, was a schoolteacher.
He graduated from historically black Morehouse College with a bachelor’s
degree in mathematics in 1967. He went to work for the National Center
for Health Statistics, a division of the public health service, and
became one of the first black commissioned officers in the Public Health
Service Commissioned Corps.
After the Tuskegee study was exposed, he was determined to make more of
a difference in the world and decided he needed more training. He earned
his master’s of science degree in biostatistics in 1974 at Georgetown
University. He was awarded a second master’s, in public health, in 1977
from the University of North Carolina at Chapel Hill, where he went on
to earn a doctorate in epidemiology in 1983.
He married Dr. Rowley that year. They had met at the C.D.C., where they
were both epidemiologists. In addition to his wife, Dr. Jenkins is
survived by their daughter, Danielle Rowley-Jenkins. His brother, Dr.
Albert Daniel Jenkins Jr., died in 2006.
Dr. Rowley said her husband had always been an activist. In high school,
he had registered people to vote. In college, he was a foot soldier in
the Student Nonviolent Coordinating Committee. He was jailed, along with
the future Georgia congressman John Lewis and others, for protesting the
whites-only restaurant owned by Lester Maddox, a segregationist and
future governor of Georgia.
And while he was at the public health service, he helped start an
underground newspaper, The Drum, directed at employees who felt they
were experiencing racism in their work or witnessing it.
Later in his career, Dr. Jenkins founded the Society for the Analysis of
African American Public Health Issues, which is dedicated to eliminating
health inequities among the races.
But it was the Tuskegee study that would define his life’s work.
The last man who participated in the study, Ernest Hendon, died in 2004.
The last widow who received the medical and health benefits died in
2009. Today, roughly a dozen children of study participants are
receiving benefits.
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