Wednesday, May 30, 2007
This is a surprise. Cultural anthropologist Richard Shweder demonstrates that there are two sides to every story:
The [Tuskegee research on black victims of syphilis], which was conducted openly and without secrecy, is now commonly and routinely portrayed in one or more of the following ways: as racist science; as 'a programme of controlled genocide' (whites against blacks); as a violation of basic human rights; as a study by the US government's Public Health Service in which effective treatment for a fatal disease was withheld from a poor, uneducated, vulnerable minority group in disregard of their health and safety; as a callous scientific pursuit that ignored human values and was 'almost beyond belief and human compassion'; as 'an outrage to our commitment to integrity and equality for all our citizens'; as a research project in which the government gave syphilis to black people so as to scientifically document the natural course of the illness; as an 'experiment' in which human beings were treated like guinea pigs or laboratory rats.
The study is also often cited as a compelling example of why we need the Institutional Review Board (IRB) system of ethical surveillance and control for research with human subjects - a system that is now applied by most US universities to all research with human beings, regardless of funding source (public, private or personal) and research topic (medical or non-medical). ...
My own interest in learning more about the Tuskegee syphilis study began with a dinner conversation with a friend, who is a doctor. ... Although I knew relatively little about the details of the Tuskegee Study, I had somehow acquired the impression that many decades ago during the days of unregulated medical science the US Public Health Service had actually infected black men with syphilis. This is a not uncommon belief among black and white Americans who have heard of 'Tuskegee'.
But my friend told me: 'Nobody was given syphilis in the study.' All the participants (black sharecroppers in Macon County, Alabama in 1932) already had syphilis, 'but they were not treated for the disease'. I then asked him how syphilis was treated in 1932 when the study started. 'There were some horrible, painful, expensive long-term treatments around but I don't think they really worked', he said - 'there was no effective therapy at the time'. 'Had there been an IRB system in place in 1932, applying the medical research norms of those times, would the IRB have approved the project?', I asked. 'I am not sure, but they might have', he said. I began to suspect that there was both less and more to 'Tuskegee' and the political role it now plays in popular consciousness than has met the public eye.
Shweder goes on the explain that syphilis is not quite the disease I thought it was. It is only painful and contagious in its first stages. Contrary to what I had been told, it does not inevitably lead to insanity and death. Instead, he states that "the vast majority of people who have untreated syphilis either remain asymptomatic all of their lives or else spontaneously recover from the disease." At the time, no one was quite sure how many would not. And no one was quite sure if the long, painful treatments that were given to syphilis victims during the contagious phase were worth it or not. (He states that a majority who began treatment never finished.) Shweber also has an explanation as to why the whole thing wasn't called off years later, once penicilln was discovered and became available. On this issue, his "other side of the story" did not seem quite so compelling. But Shweber's version isn't as terrible as the story I had originally understood. He says it wasn't clear to them that penicillin would have any beneficial effect that late in the game. (But why not give people to option to try it, by telling them that they actually have syphilis?)
Read the whole thing if you have the time. It's an interesting story filled with interesting ethical issues, just not the same ethical issues as I had previously thought. The actual issues were closer calls.