September 13, 2011
By Cori Ast
Some facts are so ingrained in our culture that we rarely consider their origins — especially if those origins are horrific.
On September 13, the Presidential Commission for the Study of Bioethical Issues (PCSBI) released a report titled "Ethically Impossible: STD Research in Guatemala from 1946 to 1948," uncovering United States public health officials' inhumane experiments on Guatemalans between 1946 and 1948. Among other things, the officials intentionally infected nearly 1,500 unconsenting individuals — including prisoners, members of the military, prostitutes and patients in a state-run mental hospital — with sexually transmitted diseases including syphilis, gonorrhea and chancroid.
Although the Guatemala experiments were conducted more than 60 years ago, documentation was only recently unearthed by Susan Reverby, Ph.D., a professor of women's studies at Wellesley College in Massachusetts. Publication of Reverby's discovery prompted President Barack Obama to issue a national apology to Guatemala in October 2010 and to request that the PCSBI issue a report on the extent of the study and the likelihood for similar abuses to occur today.
"The work was never published in scientific journals. There were secret reports to people who funded the studies, but not to journals. (There had to be a) recognition these studies had real ethical issues that would horrify the public if they became known," says Barbara F. Atkinson, MD, a PCSBI commission member and executive vice chancellor of KU Medical Center.
The Guatemala study echoes other infamous research: the U.S. Public Health Service Study of Untreated Syphilis, also known as the Tuskegee study. The similarities between the Guatemala experiments and the Tuskegee study are sobering. Both focused heavily on studying syphilis in vulnerable populations; both were managed from the same U.S. Public Health Service laboratory; and both featured some of the same researchers, including John Cutler, who was a scientist at Tuskegee before leading the Guatemala experiments.
KU Medical Center's Christopher Crenner, MD, PhD, is familiar with John Cutler and the other Tuskegee researchers. Earlier this year, Crenner published "The Tuskegee Syphilis Study and the Scientific Concept of Racial Nervous Resistance" in the Journal of the History of Medicine and Allied Sciences.
"Cutler became a very vocal defender of some aspects of the Tuskegee study," says Crenner, who is associate professor and chair of history and philosophy of medicine at the University of Kansas School of Medicine. "When Cutler began to speak out against critics of the Tuskegee study in the '70s and '80s, he formed a counter-narrative to justify the science behind some of the actions taken in Alabama."
In fact, Cutler argued that understanding the uninhibited progression of syphilis, a prominent public health threat at the time, would be helpful for science.
For years, historians believed that the researchers' willingness to withhold treatment from the African-American men participating in the Tuskegee study was influenced by racial assumptions. Crenner's research confirms these suspicions.
"In early investigations, historians saw the racist implications of the study overall, but no one looked very much at the specific science questions. My paper looks at those scientific questions in the Tuskegee study, and I find that those questions were equally tainted by racism," says Crenner.
The Tuskegee study was based around a concept Crenner calls scientific racism.
"There is a distinction between scientific racism and racism," says Crenner. "Scientific racism is based on science and hypothesis testing. It attempts to give scientific credibility to the idea that there is a natural hierarchy among races, where some groups are innately superior to others."
By the 1930s, Crenner says, scientists were beginning to be uncomfortable with public talk about racial superiority, so the language was gradually abandoned. But the influence of the earlier thinking sometimes persisted. The U.S. Public Health Services researchers at Tuskegee characterized their study in a way that de-emphasized race. They "made it seem 'race-less,' a study intended to advance a general understanding of untreated syphilis," Crenner notes in his paper.
The fact that the study's publications avoided racist language made it difficult to see the influence of scientific racism — until Crenner's paper was published. Crenner uncovered the minutes of a July 1936 public presentation by one of the study's lead researchers, Raymond A. Vonderlehr. In the discussion afterwards, Vonderlehr fielded questions from his audience about his findings on syphilis in the brain and nervous system. Vonderlehr described unpublished work done to discredit the many possible explanations for his findings on syphilis in the brain. He attempted to show that only one explanation remained: that there was a fundamental difference in the brains of his study's black subjects. This idea had been a core hypothesis in earlier scientific racist views — that inferior races' less-developed nervous systems responded differently to syphilis.
To Crenner, uncovering the scientific racism underlying the Tuskegee study and other studies, such as the Guatemala experiments, is critically important to research today. "Understanding what went wrong in the past helped alert us to what can go wrong in the present," he says. "For example, today's pharmaceutical trials in impoverished nations are flush with incentives. The rewards and benefits of science today are higher than ever, and there are billions of dollars to be made. We have to be sure that strong regulations are in place for protection."
He also cautions that some of our assumptions about genetics could be based on "a lingering heritage" of scientific hypotheses based on scientific racism.
The PCSBI's Guatamala report uncovered very few mentions of race in Cutler's study and post-study notes, and the final report concluded that race was not a factor in immunity to the sexually transmitted diseases studied by his team.
Cutler died in 2008, but his work in Guatemala has sparked a thorough review of ethical guidelines for human subject research. In August of this year, an international research panel through the PCSBI released an evaluation of today's ethical guidelines governing human subjects research and made recommendations to improve these guidelines. The Department of Health and Human Services is also currently accepting comment through October 26 on another set of proposed regulations for human subjects research.