Mary Harper, 86, Advocate of Patients’ Rights

Mary Starke Harper, one of the leading U.S. authorities on mental health and aging and the last living healthcare team member associated with the American government’s infamous Tuskegee Syphilis Study, died July 27 in Columbus, Ga. She was 86.Harper became an outspoken advocate for patients’ rights and advised four presidents on mental health and aging.Harperwas 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 health care 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 health care, Harper spent 30 years with the Veterans Administration, much of it directing 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 Institutes of Health’s minority fellowship program, which reportedly has educated more than 10,000 scientists, doctors and other health professionals.The oldest of eight children, Harper was born Sept. 6, 1919, in rural Fort Mitchell, Ala., but grew up in nearby Phenix City, Ala. 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, the noted educator and scientist.Harper earned a diploma in nursing from Tuskegee Institute in 1941.She became nursing director of the veterans hospital in Tuskegee. and worked at VA hospitals in Michigan and New York. She was awarded 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 adviser on mental health and aging to Presidents Reagan, George H.W. Bush and Clinton.

Mary Harper, 86, Advocate of Patients’ Rights

Mary Harper, 86, Advocate of Patients’ Rights

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