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First published in Hospitals & Health Networks OnLine, February 2, 2010
During a recent research project, I was reminded of how individual, cultural and societal memories affect the decisions we make years or even decades later.
So I was working on a study of the participation in clinical trials (or lack thereof) by members of minority groups, and from early on, one aspect of my research was striking. I was asking why so few people of color join clinical trials, and many informants — often African-American, but not always — responded with their own question: "Can you spell 'Tuskegee'?"
These people were not referring generally to Tuskegee University, a noted, historically African-American institution in Alabama, founded in 1880, and home to, among other distinguished Americans, the great botanical scientist George Washington Carver and the Tuskegee airmen, whose exploits as the first African-American fighter pilots in U.S. history led to their unparalleled record of having never lost a bomber escorted by one of their number.
No, when my informants spoke of Tuskegee, they were referring to one of the most horrific human clinical experiments ever conducted.
From 1932 to 1972, at Tuskegee University, desperately poor African-American sharecroppers who had syphilis were enrolled in the "Tuskegee Study of Untreated Syphilis in the Negro Male." Its premise was simple: Let syphilis go untreated in these men to find out what it does to the human body. Although at the beginning of the study meaningfully effective treatment did not exist, that situation soon changed. The researchers went out of their way to make sure that available curative treatment was not offered to the subjects, even to the point of getting them exempted from the military draft, in case military physicians might learn of their condition and treat them. The study was finally ended in 1972, after whistle-blowers brought attention to it.
Once the experiment was revealed, television reporter Harry Reasoner described it as an exercise in "using human beings as laboratory animals in a long and inefficient study of how long it takes syphilis to kill someone." Author James Jones, who has written extensively about this horror, described it as "the longest nontherapeutic experiment on human beings in medical history."
According to Infoplease, "By the end of the experiment, 28 of the men had died directly of syphilis, 100 were dead of related complications, 40 of their wives had been infected, and 19 of their children had been born with congenital syphilis." All courtesy of the U.S. Public Health Service and its cooperating partners — white and African-American — at Tuskegee.
The Civil Rights Act had been in effect for eight years when the experiment was finally terminated.
On May 16, 1997, then-President Bill Clinton apologized to the eight remaining survivors, saying, "The United States government did something that was wrong-deeply, profoundly, morally wrong. It was an outrage to our commitment to integrity and equality for all our citizens … clearly racist."
Apology or no, the damage had been done. Although many contemporary Americans think of oral history as a quaint way of retaining social memories among Third World populations, it is a bit more than that: It is a way of remembering truths that others would like forgotten. And the Tuskegee syphilis study is vividly, painfully remembered.
There were many such experiments, involving people of all racial and ethnic groups, including children, cancer patients, demented seniors and perfectly healthy people who were exposed to dreadfully high doses of radiation. These incidents have not been forgotten by some people.
This is not confined to health care. In 1692, in Scotland, members of the Campbell clan murdered members of the MacDonald clan who had offered them hospitality. There are still places in this world where you might think twice about inviting Campbells and MacDonalds to the same cocktail party.
The French decided to take over Southeast Asia in the 19th century, with less-than-stellar results, and the British did the same in the Middle East, and we are still living with the fallout, especially of the latter.
Nearly 65 years after the end of World War II, millions of people still harbor profoundly negative feelings about the Nazis and the Japanese Empire. Almost 35 years after the murderous Khmer Rouge took control of Cambodia, as I have written previously in this column, their dreadful legacy affects many aspects of life there.
For many of us for whom the Vietnam War was a current event, as opposed to a minor historical footnote, it was one of the formative influences of our lives, and as we watch the United States commit more troops to Afghanistan in a well-meaning attempt to achieve something resembling victory, the parallels to that long-ago Southeast Asian conflict are inescapable to us.
And as it returns from the near-dead after the 2005 hurricane, New Orleans and its people will always remember the failure of government on every level to respond to an unmitigated disaster, even as disabled elderly people in wheelchairs desperately called 911 while they drowned. Will the name "Katrina" ever fall the same on our ears?
I do not write this as some kind of second-rate civics lesson, but rather to emphasize an extremely important point: People remember, population groups remember, cultures remember. Americans are good — indeed, excellent — as a people at forgetting, but individuals and subgroups do not forget. And what we remember — the traumas we cannot shed — will influence our opinions, our politics and our decisions all our days.
Late last year, a friend of mine was in Poland on business and visited the Nazi death camp memorial at Auschwitz. I called him some days later to ask what it had been like. My friend is not a wimpy type; he is a tough, brilliant professional who has seen a thing or two in his life. His response: "I can't talk about it." I empathized; after visiting Tuol Sleng, site of the prison in Phnom Penh, Cambodia, where 20,000 men, women and children — including infants — were tortured, starved and murdered during the reign of the Khmer Rouge in the 1970s, I was too stunned to even speak. I could almost palpably feel the presence of their poor tormented souls.
Small wonder, then, that people bitterly remember the Tuskegee syphilis experiment, the injection of cancer cells in 1963 into demented patients in a New York hospital in order to see how the disease spread, and the exposure in the 1950s of unknowing human beings to huge doses of radiation. And although sometimes there were not racial or ethnic or class overtones, most of the time there were; these experiments were not conducted on movers and shakers.
And how many hospitals — no matter how sensitive they are now to their surrounding communities and service populations — still suffer from community resentment of practices long since abandoned? All hospital leaders know about EMTALA and protection of human subjects, but how many community members still fear being "dumped" or being used as "human guinea pigs"? How many community leaders look at the Great Big Teaching Hospital and remember when people living nearby were evicted to build a parking lot or a new cancer center?
And how large is the shadow cast on current health care "reform" efforts by the failure of the Clinton health plan? It is generally believed that the Obama administration was influenced by the fact that the Clinton administration presented a formal bill to a Democrat-controlled Congress, which rejected the proposal. This time around, so the thinking apparently went, it was a better idea to promulgate a few reform principles and let Congress produce the actual legislation.
We'll see if that worked. The Clinton administration took a year to get its bill to Congress — more than enough time to allow opponents of all stripes to marshal their forces. So the Obama administration started setting deadlines (which were not met) and issuing threats and making all kinds of efforts to ram the thing through, which didn't really work, but that did lead to a rushed approach that may not have produced the world's dandiest piece of health policy legislation.
I should add that, whether it was the Medicare Modernization Act or whatever Congress produces this time in the name of "reform," I am not thrilled by the fact that our legislative representatives are, for the most part, perfectly willing to vote for or against something neither they nor their staff nor hardly anyone else has actually read, because they were not given time to read it. For all they know, it could contain a prohibition on eating cheese, hidden in there somewhere. That may not matter to you, but I like cheese.
After all, the defense-funding bill that passed at the last minute at the end of the 2009 congressional session contained a provision extending economic stimulus subsidies for unemployed people who could not afford their COBRA insurance payments. Did I support this extension? Yep. Do I think that most members of Congress knew that it was in there? Nope — and they were running for the exits, anyway, as Christmas was approaching. An excellent time to sneak a little something extra into legislation.
And we all have to live with the consequences.
But I digress, as I so often do. Today's lesson is simple: Whether in policymaking on the grand scale, or planning to launch a new program, or seeking to enroll people in clinical trials, or just looking to hire new talent, it is critical that we be aware of the baggage that individuals and advocacy groups and racial and ethnic minorities and generations carry.
Fifty years from now, young people will visit Washington, D.C., and see the Vietnam War Memorial as an interesting architectural accomplishment, or perhaps look for the name of a great-grandfather inscribed on it. I, on the other hand, can't visit the memorial without weeping. But I won't be around in 50 years.
Time moves on, new generations emerge, the formative moments of one age group are mere bagatelles to the next. But within each family, each community, each ethnic and racial and religious group, each generation, are certain memories that are conveyed to the inheritors, and those memories will live on, for better or worse, as long as there are human beings on this earth. And they will affect our attitudes, our political persuasion and our policymaking.
In The Great Gatsby, his breathtaking rumination on the underlying, unspoken and malignant rules of American society, F. Scott Fitzgerald wrote, "Gatsby believed in the … future that year by year recedes before us. It eluded us then, but that's no matter — tomorrow we will run faster, stretch out our arms farther.… And one fine morning — So we beat on, boats against the current, borne back ceaselessly into the past."
Although I believe that Gatsby was one of the two greatest American novels of the 20th century (along with Toni Morrison's Beloved), I hope that Fitzgerald was wrong in believing that we are always prisoners of the past. I hope that we can free ourselves from the fetters of bad memories and move forward, breaking new ground, forging new relationships and creating positive change. But in doing so, whether in health policy or ethics or in running an organization, we need to be exquisitely sensitive to the ghosts that haunt so many of us.Copyright © 2010 by Emily Friedman. All rights reserved.
Copyright ©2010 by Emily Friedman. All rights reserved.
Emily Friedman is an independent writer, speaker and health policy and ethics analyst based in Chicago. She is also a regular contributor to H&HN Weekly and a member of the Center for Healthcare Governance's Speakers Express service.
First published in Hospitals & Health Networks OnLine, February 2, 2010
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