Mary S. Harper, 86; Expert on Mental Health, Aging Lamented Role in Tuskegee Syphilis Study

Mary Starke Harper, one of the nation’s leading authorities on mental health and aging and the last living healthcare team member associated with the U.S. government’s infamous Tuskegee Syphilis Study, has died. She was 86.

Harper, an outspoken advocate for patients’ rights who advised four U.S. presidents on mental health and aging, died of cancer July 27 at her home in Columbus, Ga.

The Alabama-born Harper, a 2001 recipient of the American Academy of Nursing’s Living Legend Award, was a nursing student at what is now Tuskegee University in the early 1940s when she was assigned as a volunteer to the “Tuskegee Study of Untreated Syphilis in the Negro Male.”

The 40-year U.S. Public Health Service study, which began in 1932, involved black men in rural Macon County, Ala. About 400 of the participants were chosen because they already had syphilis; about 200 others were part of a control group that did not have the disease.

The men who had syphilis, however, were not told they had the sexually transmitted disease. If left untreated, it can cause blindness, deafness, mental illness, heart failure, paralysis and bone deformities.

Researchers told the men -- impoverished sharecroppers who were promised free healthcare and other inducements to participate in the study -- that they were being treated for “bad blood.”

The study was conducted to determine from autopsies what syphilis does to the human body, and treatment for the disease was deceptively withheld even after penicillin therapy became widely available in the 1940s.

Harper was outraged and heartbroken when the true nature of the unethical study was exposed in 1972.

By then, 28 participants reportedly had died of syphilis, 100 were dead of related complications, at least 40 wives had been infected and 19 children had contracted syphilis at birth.

“I was very angry that they had me, a black person, doing something bad to black men,” she told the Charlotte (N.C.) Observer in 2003. “It was just a horrible feeling.”

As a result of her experience with the study, Harper said, “I’m a stickler for informed consent. We train minority people to ask questions about the research they’re going to be participating in. A lot of black people, especially the older ones, won’t ask questions.... I don’t ever want that to happen to other people again.”

During her more than 65 years in healthcare, Harper spent 30 years with the Veterans Administration, now the Department of Veterans Affairs, much of it directing nationwide research and education to improve treatment programs.

She also spent more than two decades with the U.S. Department of Health and Human Services, during which she served as research director for mental health in long-term care facilities and established the National Research and Development Center in Mental Health for Asian Americans, American Indians, Blacks and Hispanics for the National Institute of Mental Health.

She also was instrumental in organizing the National Institute of Health’s minority fellowship program, which has educated more than 10,000 scientists, doctors and other health professionals over the last three decades.

As a researcher on aging and mental health, Harper was particularly interested in focusing on elderly minorities.

“She was the person who really focused on African American, Asian and Hispanic elderly,” Enid Light, an associate director for research training and career development at the National Institute of Mental Health, told The Times.

Harper, she said, also was interested in issues related to mental illness in long-term care facilities and family care-giving of the elderly.

“You didn’t say ‘no’ to Mary or that something couldn’t be done,” Light said. “She absolutely believed that you could focus research and attention on problems, and that you could find solutions to them. And she would never give up.”

The oldest of eight children, Harper was born Sept. 6, 1919, in tiny Fort Mitchell, Ala., but grew up in nearby Phenix City.

A self-described bookworm who liked to read and study, Harper studied business administration at Tuskegee Institute but changed her major to nursing. At one point while at Tuskegee, Harper was the private nurse for George Washington Carver.

Harper earned a diploma in nursing from Tuskegee Institute in 1941 and worked in Alabama before receiving a bachelor’s degree in education from the University of Minnesota in 1950, followed by a master’s degree in nursing education and educational psychology in 1952. She then became nursing director of the veterans hospital in Tuskegee.

She later worked at VA hospitals in Michigan and New York, and received a doctorate in clinical psychology and medical sociology from St. Louis University in 1963.

While she was working as coordinator of long-term care programs for the National Institute of Mental Health, President Carter invited Harper to serve as director of the Office of Policy Development and Research for the 1981 Conference on Aging. She later served as an advisor on mental health and aging to Presidents Reagan, George H.W. Bush and Clinton.

Over the years, Harper published 180 articles in professional and scientific journals and five books on mental health, including what has been called the country’s first book on mental illness in nursing homes.

In 1990, Tuskegee University established an endowed chair for Nursing Research in Gerontological Nursing in Harper’s honor. And in 2001, her contributions to mental health were honored with the dedication of a 126-bed psychiatric hospital for the elderly in Tuscaloosa -- the Mary Starke Harper Geriatric Psychiatry Center.

Harper retired in 1995. “But she only retired from government,” Light said. “She was just as busy after she retired, if not more busy.”

Harper’s husband of 20 years, Willie, died in 1963; her daughter, Billye, died in 1969. She is survived by a brother and three nephews, whom she raised.