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Initiative targets blacks' distrust

Roswell Park Cancer Institute is launching an initiative aimed at tackling entrenched distrust of the medical establishment in pockets of the African-American community.

The new Office of Cancer Health Disparities Research at Roswell Park was launched Wednesday with a reception for Dr. Vanessa Northington Gamble, a renowned expert on a 75-year-old government-sponsored syphilis study that left hundreds of black men untreated for the disease. The public disclosure 30 years ago of the U.S. Public Health Service study at Tuskegee Institute, a historically black college in Tuskegee, Ala., has had far-reaching effects in terms of solidifying distrust of the medical establishment among some African-Americans.

"There's some data that shows that people talk about the syphilis study as a reason why they don't trust the medical institutions, even all these many years later," said Gamble, just prior to a lecture she gave in Roswell Park's David C. Hohn, M.D., Lecture Hall.

Gamble is the director for the National Center of Bioethics in Research and Health Care at Tuskegee University.

The syphilis study, one of the most well-documented cases of unethical human experimentation in U.S. history, was begun in 1932 using a group of 600 black sharecroppers. The 399 of the men infected with the disease were initially promised treatment as part of the study, but when it failed to yield any useful data, the Public Health Service decided to leave the men untreated while simultaneously following the course of the disease to the men's eventual deaths.

"The thing is, the syphilis study did not end until 1972. So it's not that long ago," said Gamble, who was chairwoman of the Tuskegee Syphilis Study Legacy Committee that in 1997 led to a public apology by President Bill Clinton.

"The other thing, too, is that . . . many people don't know all the details about the syphilis study. They might have all the details wrong. They know something happened and because the people were black and poor. It's become a symbol of people's ideas toward the medical profession today."

For instance, some mistakenly believe that the experiment involved the Tuskegee Airmen, the first black fighter pilots trained by the U.S. military during World War II.

The confusions, Gamble said, may be attributed to two separate dramas aired on HBO, one about the syphilis study at Tuskegee Institute, the other about the Tuskegee Airmen, both starring actor Laurence Fishburne.

Gamble said it would be a disservice to the memory of those in the syphilis study if other African-Americans use it as an excuse to avoid medical treatment or clinical research aimed at helping other blacks.

"Those men wanted health care. That's why they were involved in the syphilis study. They thought they were getting health care," Gamble said.

Deborah Erwin, a social anthropologist, is the director of the newly launched Office of Cancer Health Disparities at Roswell Park.

"We've been working on it internally, but we wanted to launch it to the community with a messenger like Dr. Gamble so that we put right out on the table the issues of racism, mistrust and all of the things that go along with social injustice," Erwin said.

"This is an opening of a dialogue with the community. We hope to continue this dialogue ... so that we are assured that compassion and equality are basic values that are held on any community-based research and care, here at Roswell," Erwin said.


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