The news that doctors representing the government intentionally infected Guatemalan citizens with STDs has inevitably provoked comparisons to the famed Tuskegee experiment where black men were denied treatment for syphilis so that doctors could study the course of the disease. In another post, Jessie has eloquently discussed the broader public health and racial implications of this work. But while comparisons to the Tuskegee experiment are often the first that come to mind, these are not the only cases where mostly white doctors have exploited patients of color in the name of experimentation and/or racist ideology. Journalist Amy Goodman recently interviewed medical historian Susan Reverby (who brought the Guatemalan scandal to light) and reporter Eileen Welsome to discuss other cases where people of color have been abused and mistreated by the medical community, often with governmental support. This is a transcript of the interview between Goodman and Welcome, discussing the case of Elmer Allen:
“AMY GOODMAN: I want to turn to Eileen Welsome, who won the Pulitzer Prize for revealing the names and doing the investigation into eighteen people who were injected with plutonium in the ’40s without their knowledge by federal government scientists. In a 2004 interview on Democracy Now!, I asked Eileen Welsome about one of those people. His name was Elmer Allen.
EILEEN WELSOME: The sad part about and the tragic part about Elmer’s story is that nobody believed him. He went to his doctor and told him, you know, “I think I’ve been injected with something.” His doctor diagnosed him as a paranoid schizophrenic at the same time that he was conversing with the atomic energy scientists in Argonne National Lab to provide them with tissue samples and—
AMY GOODMAN: Wait, wait, wait. His doctor said he was a paranoid schizophrenic at the same time his doctor was providing Elmer’s tissues to the government scientists doing the experiment?
EILEEN WELSOME: That’s correct. That’s what the medical records show. So, Elmer was not only used in 1947 when he was injected with this radioactive isotope, but he continued to be used as a guinea pig for the rest of his life.
AMY GOODMAN: That was Pulitzer Prize-winning journalist Eileen Welsome. She revealed the names of eighteen people in this country injected with plutonium. Elmer Allen was a black conductor on a train in San Francisco. He was injected at the University of San Francisco hospital. This story of the people injected with plutonium, he’d always said—he used the term “I was guinea-pigged by the government.” His wife was a nurse. His daughter was a teacher. We spoke with Elmerine Allen, his daughter. They never understood what he was saying, and they believed what the psychiatrist was saying. Yet the psychiatrist was working with the US government, telling them he was crazy. But he wasn’t.”
And another story about medical experimentation on Puerto Rican women:
“So, what happened in Puerto Rico is that the research, you know, for birth control pills was done—the major work was done here in Massachusetts, actually, but giving out birth control pills was illegal. Contraception was illegal in Massachusetts. So the research was done in Puerto Rico. And the use of very high estrogen dosages was because at that point they really weren’t sure what would be necessary, and they wanted to absolutely make sure that they could stop the pregnancies. So, and there were connections to people. They were working with a physician who had connections in Puerto Rico. So, that’s one of the reasons they went there. There were some objections, clearly, within the Puerto Rican community to this, but women also, frankly, wanted a better way to protect themselves from endless pregnancy. At that point, in Puerto Rico, the Church actually protected sterilization and thought sterilization was acceptable after women had had enough children. But the Church actually objected to the research on the pills, when a number of women—we think a couple of women died because of the high estrogen.”
I raise these stories here to make the point that there is a long history of abuse, gross mistreatment, and exploitation of people of color by the medical establishment in this country. Such stories are documented both in the accounts of these unnamed Puerto Rican women, Elmer Allen, and in several excellent books that show the disturbingly recurrent and often government-sanctioned nature of these practices. Jennifer Nelson ‘s exceptional book, Women of Color and the Reproductive Rights Movement, explores the widespread practices of sterilization abuse wherein mostly white male doctors performed hysterectomies on women of color without their knowledge and consent for decades, with some of the most notable examples of this being the forced sterilization of Fannie Lou Hamer , a 1960s activist, and Minnie Lee Relf, a mentally disabled young woman who was underwent this process at age 13 without giving consent or understanding the effects of the procedure. Rebecca Skloot’s book, The Immortal Life of Henrietta Lacks, also explores the medical community’s exploitation of a poor black woman’s medical tissue without her or her family’s consent.
These cases abound, and there are probably additional ones of which I am unaware. The common theme among them, however, is the story of white doctors and other members of the medical establishment—often acting with the support of local, state, and federal governments—engaging in ethical and medical violations that exploit communities of color in various ways. These practices erode trust, minimize confidence in the medical establishment, and most importantly, manifest some of the worst forms of racial dehumanization and inequality. Yet they also highlight a particular irony in contemporary discourses about race relations. Often, one of the talking points used to imply that blacks are oversensitive and embellish racial issues is the citation that blacks are more likely to believe various theories about the inception and spread of the AIDS virus that point to government complicity or intent.
In 2005, a Washington Post article cited that more than 25% believed the virus was produced by the government, 12% believed the CIA was responsible for spreading it, and 15% asserted that it was a form of genocide among black people. During the 2008 presidential campaign, Dr. Jeremiah Wright was widely mocked for his endorsement of some of these statements, which were used to further the image of him as a crazy radical (and by extension, to cast doubt upon then-Senator Obama). Ultimately, the statistics about the number of blacks who believe government involvement in the creation and/or spread of the AIDS virus are often used to imply that blacks are paranoid, crazy, and grossly exaggerate racial issues to the point where they believe absurd conspiracy theories, or else that their willingness to endorse such theories hinders their treatment. This latter argument is particularly significant when it comes to the spread of HIV, since black Americans comprise only about 14% of the population but constitute the majority of new AIDS cases. Both arguments, however, suggest that the endorsement or embrace of these beliefs represents something problematic on the part of black Americans.
Rather than dismissively marginalizing African Americans’ perceptions or blaming them for allowing these beliefs to influence their health practices, I think that the recent information about yet another case of the medical community’s egregious breach of the trust of minority communities should spur a renewed attention to the continued, ongoing perils of racial stratification and inequality. Susan Reverby’s findings are undoubtedly important and critical, both on their own and because they point to a larger pattern of state-sanctioned medical abuse. But they also give broader context to ongoing public health issues like the rise of HIV/AIDS in black communities. With information available about the Tuskegee Experiment, Henrietta Lacks, Minnie Lee Relf, and now the Guatemalan women who were deliberately infected with viruses, it’s not so surprising that the theories about government involvement in the AIDS virus might take hold among certain communities who have been the target of the worst kinds of medical racism.
Let me be clear: I am not writing this to advocate the theory that the AIDS virus was government invented. However, I do believe that these blatant examples of the medical establishment’s state-sanctioned abuse of minority communities have a great deal to do with why blacks in particular are less likely to trust doctors and government. I also think it’s a mistake to suggest that blacks who hold this belief are the problem, given that there is ample evidence that government has in the past engaged in medical experimentation, mistreatment, and negligence when it comes to people of color. Acting as if some blacks’ concerns about the origins of the AIDS virus are evidence of racial paranoia or a self-imposed inhibitor to treatment is akin to suggesting that black men who express misgivings about the criminal justice system are inventing a paranoid racial reality, rather than relying on exhaustive evidence of racial profiling and disproportionate arrest rates.
The larger issue, in my opinion, is to assess how we can create a more racially equitable society so that these sorts of egregious violations don’t exist to eradicate trust in the first place.
I’m indebted to Adia Harvey Wingfield.Thank you.In fact, I’ll be using the blog in both my Intro Sociology and Qualitative Research Methods classes this Tuesday.We have similar examples here in Canada, including sterilization abuse.For example, arguably the most damaging sterilization program in Canadian history was afforded via the passing of the Alberta Sexual Sterilization Act of 1928 (1928-1972). Albertan Aboriginal people and Métis, regardless of age, were especially targeted. Towards the conclusion of Alberta’s sterilization program, Aboriginal people and Métis made up 25% of the sterilizations performed (Aboriginal people represented only 2.5% of the general population in Alberta).
Tessa and Kimberley, thanks for your response. I didn’t know anything about these issue sin Canada. I appreciate the information.