Important note: Information in this article was accurate in 2001. The state of the art may have changed since the publication date.
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San Francisco Examiner - December 12, 2001
Nina Wu
Nina Wu: What was the Tuskegee Syphilis experiment?
Al Williams: The Tuskegee Syphilis experiment was a study done between 1932 and 1972. It grew out of an effort on the part of the federal government and National Public Health Service to eradicate or to address a serious problem of syphilis in the United States.
In this particular case in Macon County, Ala., there was a very high incident of syphilis in that community, the highest in the South. It started with an effort to go in and ostensibly document the extent of syphilis in that community in order to then justify having money appropriated to treat the people and cure them. Unfortunately, rather than treat them, the money ran out for the study, the other money for the treatment phase was never appropriated, and then the decision was made to simply study these people and watch and observe the effects of syphilis on them over time. ... They (officials from the National Public Health Service) went in the community, gave physical examinations to a large group of men -- 412 or thereabouts were identified as having syphilis -- and another 200 were identified as not having syphilis and established as a control group. So the study began to be about seeing what the effects of syphilis would be on those 412 people. ... They were not made aware they had syphilis. They were told they had something called bad blood -- bad blood was a euphemism for a variety of different conditions, but they never told them they had syphilis.
Q: So their rights were violated.
A: Yes, they were grossly violated. I think in fairness, however, you have to say that at that time, the standards that exist today didn't exist then.
There was a moral obligation to make people aware that they were being studied. Today, you have something called informed consent that has to be given, that came about as a result in part because of what happened with the Tuskegee Syphilis experiment. There are those who would argue that it was standard operating procedure to not inform people of this type of thing, but clearly, it was a gross, gross violation of people's human rights.
Q: Where does that leave us today?
A: In 1997, President Clinton made a formal apology. In his apology, Clinton said the study was clearly racist in its motivation and intent. As part of that apology, he announced that a center for the study of bioethics in research and healthcare would be established at Tuskegee and a $10 million fund was set up to pay some of the people who were still alive, including some of their family members. There were only eight identified and six who were in attendance at the White House when the president made the apology.
Q: What's significant about this?
A: There is a generally accepted view that African Americans do not utilize health care systems as fully as they could and should -- and do not participate in medical research as much as they could and should because of a loss of trust as a result of the Tuskegee Syphilis experiment. You have AIDS being such a major tragedy and horror going on now -- and the highest percentage of people who are contracting the disease are African-American women, from what I understand. That's ravaging the African-American community, yet African Americans are not participating at a level that would be desirable in research because of a distrust of medical research.
Q: Dr. Alfred Poussaint is one of the keynote speakers at the symposium.
A: He's a psychiatrist, currently based at Harvard University. He is an author, psychiatrist and educator who sits on the board of Harvard's AIDS advisory project. He's an expert in the area of race and how racism plays into issues that impact people of color, particularly African Americans. He's looked at questions like how high rates of heart disease, hypertension and other stress-related diseases are suffered by African Americans and how racism has played into those problems. There's a correlation in that. We'll also have Dr. Patricia Evans, who's the medical director of the maternal and child health bureau at San Francisco's health department and we'll have Dr. LaVera Crawley, who's a lecturer at Stanford and an ethicist.
Q: Has the Tuskegee experiment become part of the African-American psyche?
A: I think the Tuskegee Syphilis experiment has become a metaphor for all of the things in the society that have reflected a betrayal on the part of the society to African Americans. I think there's a large segment of the African-American community who have some knowledge of it, but very limited. ... There was a program, an HBO special that dramatized some aspects of the experiment. ... What they didn't talk about were the white doctors behind it or the white officials that the National Public Health Service and the fact that none of them have ever been prosecuted. None of them were ever called to task.
Q: What are people most angry about? Was it the betrayal of trust, the failure to inform them or outright exploitation?
A: I think exploitation is perhaps too kind a word. I think it was savagery. It was barbaric. I mean, it was inhumane to take people who you know have a potentially life-threatening disease -- and you know they have it and you do nothing. You are charged as a physician with curing people and making them healthy and you do nothing to help them. You just sit back and watch them to see what the effects of it is on them. That goes way beyond issues of exploitation. Some have equated these things to the kind of experiences the Nazis performed on the Jews during the Holocaust. Gross human rights violations. And it reaffirms, unfortunately, for a lot of African Americans and a lot of other people -- the failure of society to treat people of color as valid human beings. This experiment says, "We think that you are less than human. We would do something to you that we would not do to ourselves because you are less than we are." That's the message that kind of comes through. So it's consistent with the brutality of slavery. That's not to say that progress has not been made, and that's not to say that all people of society are that way. It is to say, however, that racism is systemic and is inbred in the society.
Q: And this is an attempt to do that.
A: This is an attempt on our part to help a broad audience understand the implications or the legacy of this situation in order to begin to think about how can we address this in a constructive way and move forward.
E-mail Nina Wu at nwu@sfexaminer.com
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