The president of the United States will make an extraordinary formal apology today to four fragile survivors of a 65-year-old medical experiment that has been compared to what the Nazis did in the concentration camps of World War II.
President Clinton’s apology is directed toward victims of a research project begun in Tuskegee, Ala., in 1932 that tracked syphilis among 400 African American men, most of them laborers or sharecroppers.
They were told they suffered from “bad blood,” and were offered free health care and burial insurance. But none received treatment for the disease, although medication was available, and at least 28 died from syphilis before the experiment was ended in 1972.
A lawsuit on behalf of the victims and their families resulted in the government’s paying about $9 million in damages to survivors - including 21 wives, 16 children and 2 grandchildren. The firestorm of publicity also led to guidelines aimed at making sure that informed consent is a condition for human subjects of scientific research.
But the nightmare in Tuskegee lives on in the minds of African Americans, according to researchers like Dr. Steven Thomas, director of the Institute for Minority Health Research at Emory University in Atlanta.
“Thomas said his studies focus on Tuskegee’s “continuing impact on African Americans who still fear becoming victims of medical research, who cannot trust in or benefit from medical breakthroughs because they are still haunted by the ghost of what they see as genocide - the kind of thing the Nazis did.”
He said the White House apology was “a step toward atonement.” Yet he questioned, “Will it heal the breach of trust that still lingers in the African American community regarding public health and medical programs in this country?”
Thomas asserted that African Americans are still uneasy about signing medical consent documents, about blood donations, and about becoming involved in any research programs. Handed down through generations, he charged, was the terrifying memory of Tuskegee, which has been perpetuated into a myth, subscribed to by some African Americans, that AIDS is another plot against them.
“We are dealing with a deterioration of the public health infrastructure in this country as far as African Americans living in poverty are concerned,” observed Thomas.
He complained that despite the current flurry of publicity surrounding Tuskegee, little effort has been made to include details of what happened there in books of medical ethics.
A recent survey by the Institute of Minority Health Research found that 36 percent of African Americans thought it “very likely” they would be used as guinea pigs in medical research. Only 16 percent of whites surveyed had the same concern.
David Bositis, a senior analyst at the Center for Joint Political Studies in Washington, said he was unimpressed by the White House’s apology to the survivors of Tuskegee.
“I see this as nothing more than a public relations exercise for Bill Clinton in his latest role as a race relations president,” said Bositis.
Bositis suggested that the decision of South Carolina Gov. David Beasley in lowering the Confederate flag on the State Capitol carried more real impact because it was a courageous move on the part of a conservative state executive.
In addition to the presidential apology to the Tuskegee survivors, who range in age from 91 to 100, the White House is expected to announce new initiatives to improve bio-ethics training.
That proposal evoked criticism from political analyst Stephen Hess of Washington’s Brookings Institution, who commented, “It is a good thing for the president to apologize for this great obscenity of American history, but it doesn’t really matter in the long run if all he follows up with is a task force or a White House conference on racial problems.
“What he has to do is infuse massive amounts of money into our inner cities. This is a problem that will take money, not rhetoric.”
MEMO: This sidebar appeared with the story: MISTRUST A recent survey by the Institute of Minority Health Research found that 36 percent of African Americans thought it “very likely” they would be used as guinea pigs in medical research. Only 16 percent of whites surveyed had the same concern.